Cancer Stories: The Art of Oncology

"Wall Street doesn't believe in this target," by Dario Altieri. A scientist shares his 12-year journey that led to the discovery of a drug now in clinic. TRANSCRIPT Narrator: Wall Street Doesn't Believe in This Target by Dario C. Altieri, MD (10.1200/JCO.22.00180) March 2, 2009. Just published in the Journal of Clinical Investigation.1 And we even got the cover. Twists and turns of heat shock protein-90 (Hsp90), the chaperone, the evolutionary capacitor. Great name and important cancer target. People smiled when I talked about this at the Hsp90 conference. No, no, really there is a lot of it in mitochondria, and only in mitochondria of tumor cells. And, I don't know why, but Hsp90 drugs don't touch it: somehow, they don't get to mitochondria. So, I made my own. Took an old Hsp90 inhibitor, 17-allylamino-17-demethoxygeldanamycin and attached it to triphenylphosphonium, a carrier that basically gets anything into the mitochondria. No, of course, I didn't do the synthesis in my laboratory. What do I know about medicinal chemistry? Outsourced it. Like sneakers and sweaters. And after three months, there it was: an Hsp90 inhibitor that only goes to the mitochondria, causes aggregation of a lot of proteins, and kills tumor cells in minutes. Makes sense, right? Mitochondria must control protein folding, especially in cancer, and they do it with chaperones. Inhibit the process and tumor cells can't cope. Normal cells don't seem to mind. So, strong preclinical activity, and against a lot of different tumor types. Better than any other Hsp90 inhibitor. Good safety. Totally different mechanism of action. And even a cool name, Gamitrinib. Tired of curing mice. What if this were to work in people? Ideas are made in academia; drugs are made in companies. Okay, fine, then I'll launch a startup, spinout, whatever they are called. The (former) doctor-turned scientist now turns entrepreneur, and then captain of industry. Problem is, I am not like that. More like an (aged) boy scout. The inner soapbox says: it belongs to the American taxpayers; they funded it; it's theirs. Excellent start. What else? If doctors and scientists become businessmen (or businesswomen), who will take care of humanity and discover new things? Perfect for a campaign ad. Sold. Bring it to the patients solely from academia: no pharma, no biotech, no investors, no nothing. Soapbox meme for the day: Yes, we can. It's going to cost. So? I'll write a grant, that's what I do for a living anyway. And the fact that I know zero about drug discovery? Or drug development? Laboratory-Clinical Transition Award from the Department of Defense. Great title. Three years of funding. Perfect for me. Pass-through money, nothing for the laboratory, but it pays the bills of outsourcing. First things first. Synthesize Good Laboratory Practice (GLP) Gamitrinib. Already getting a pretty good hang on the acronyms. Hey, we made this drug lots of times before and has never taken this long. It's almost a year and counting. The Department of Defense (DoD) is on my case because I am already behind. What's going on? Yes, I understand that we don't make anything in this country anymore. New import permits that need to clear the Indian government? The what? This is just a chemical, not an international incident. Yes, I get it, nothing I can do about it. My new job is mailman. And telephone operator. Finally shipped the GLP drug for the toxicology. Two animal species, says the US Food and Drug Administration (FDA). Rats and dogs sound good to me. Should I feel sorry for the dogs? Rats not so much. But what if Gamitrinib poisons the mitochondria in the brains? Or hearts? Wait, you said it's just perfect? Animals are doing great, all of them. And no toxicity at all, like giving them…water. Wow, that's some news. Feeling quite pleased with myself. See? I said it all along: mitochondria are wired differently in cancer. That's why the drug is safe for normal tissues. Maybe I should write a review article about that. Serious boost of the citation index. I am sorry, what? Yes, of course I know that the drug is purple. Okay, you filtered it before giving it to the animals and instead of purple it turned white? And you did that to all animals. For the entire time. Oh, what do I think it means? I think it means that you filtered out the drug and we have been giving animals…water. Yes, I get it. I need a new formulation. And start over. Note to self: find a new Contract Research Organization (CRO) that doesn't give water to the animals. Formulation experts. Big pharma ex-pats who now have their own CRO. Everybody is an entrepreneur here. Is this drug oral? Nope. Is it soluble in water? Not at all. So, it's an intravenous (IV) infusion? Yes, that's what it is. Sorry, then it's not a drug. It's not? And what about things like, you know, paclitaxel or doxorubicin? Aren't they also insoluble and given IV? Last time I checked, we used them for half a century and saved millions. Oh, now we think differently? I see, Fail Fast: that's how we think now. And mine, whatever it is if it is not a drug, has already failed. Nobody likes to take risks. Soapbox meme for the day: If nobody takes risks, how do we make progress, exactly? So, maybe I am in good company: paclitaxel and doxorubicin would also Fail Fast today. It's doable. Nobody likes it but it's doable. Sterile-filter the emulsion components and then bring the particle size below 200 nm. Nice. How do I do that? With a microfluidizer. And why nobody likes it? Oh, because the microfluidizer is a dirty machine and where you make Good Manufacturing Practice is called a clean room. Impeccable logic. But a place in California may do it. For a fee, of course. Oh, and you have to buy the machine. Buy what? Or lease it, whatever. People may not like it, but the whole thing works like a charm. Except, of course, when the microfluidizer stops for no reason in the middle of the run. Media fill looks good. Drug is stable for months in the new formulation. Release testing coming together nicely. I am running out of money. Burned through not just one but two DoD grants and all my research kitty. Nothing saved for the swim back: talk about risk-taking. At least the repeat toxicology is paid for and looks good. The drug, the real thing this time, is safe. They even did ECGs on the dogs. Thank goodness I didn't have to read those, but they are normal: no QTc liability. Can't drop the ball now, but I really need money. Here is how you do it: silence the inner soapbox and enchant the big pharma suits that are coming over. Use the right words. It's not early stage anymore. Asset totally derisked. Sure it's ready for prime time. It works. I am a natural. Maybe I should have done this before. A lot of nodding around the table. The suits must be in awe with the great pharmacokinetics, long half-life, and fabulous safety. A hand goes up. I am sorry? Sales data? Sales of what? What is the unit price? No, no, no, we are not there yet. I haven't even filed an Investigational New Drug (IND) application. Something different now. Analysts who advise big-time investors. They don't wear suits. Sweaters for sure. Maybe black tees a la Steve Jobs. They like new things and totally live by risks. Sounds like my crowd. And don't forget, they can get tons of money from people who already have tons of money and want to make even more money. My crowd? Voices out of a polyphone. Yes, it is Hsp90. Yeah, the chaperone. Sure, I know, it has been around for a long time. But this is a completely new story: nobody ever tested a cancer drug that goes to a subcellular organelle: that's really where the action is. Yes, Hsp90. And mitochondria, they used to be bacteria two and a half billion years ago, but they turned out to be important in cancer. I know that too, Hsp90 drugs didn't fare well in the clinic. Lot of toxicity, basically no efficacy. Yes, very unfortunate. But this one has a completely different mechan…Sure, I would like to hear that perspective. I am sorry, did you say, Wall Street doesn't believe in this target? Triaged the first time but funded on the resubmission. Could have been worse. This one is a grant from the National Cancer Institute. And a nice award from the Gateway Foundation is coming too. Enough to pay for the clinical trial. Single site, standard phase I. Accelerated dose escalation. Up to 35 patients with advanced cancer. All comers. Drug vials ready to go. And a fantastic clinical investigator to run the trial. You really don't want me in the clinic. The only thing missing is IND approval. Right, there is that. No, not a commercial IND, investigator-initiated IND, thank you very much. The FDA people are the nicest in the world. Super-helpful, don't believe otherwise. Or maybe they just feel sorry for the clueless applicant. Thirty days to respond to the questions. Totally getting a promotion to a higher rank of telephone operator. And publisher of FDA modules. And certifier of United States Pharmacopeia (USP) . recommendations. And fixer of Chemistry, Manufacturing, and Controls deficiencies. Oh, and let's not forget the specs for polytetrafluoroethylene filters. Then the examiner mutters two words at the end of a phone call. Good luck. Then, nothing. No more questions, e-mails, or phone calls. Right on the thirty-day mark. Were you expecting this? It's a letter; it says study may proceed. What would the day look like? The first patient to be dosed. Maybe I should go to the clinic: it's in town, not far from where I am. I don't think I can pass muster as one of those confidence-inspiring docs in pharma ads. But I do well as chief executive officer. The cufflinks look good, and so do the shoes. I can impress the family. My Italian accent can pass as straight from South Philly, so I have that also going for me. And I can more than hold my own if I need to talk about Philadelphia Eagles football and worries with Jalen Hurts' arm for next season. I used to be good with my patients. Or at least I convinced myself of that. Yes, this is an experimental drug straight out of our backyard, right here in Philadelphia. No, I don't know if it will work, but I sure hope it will. And thank you, thank you so much for being part of the trial. What if I make these people even sicker than they are? I took an oath a long time ago. Anyway, I know the literature on phase I studies, chances are it just won't do anything, so nobody gets hurt and I am finally done with it. I never thought this moment would arrive. There is none of that. January 10, 2022. It's just a late-night e-mail on the anniversary of my mom passing from lung cancer. Hey, the first patient did great at the starting dose of Gamitrinib. No problem whatsoever. The next patient will now get twice the dose. I hope we get that started this month. Happy new year. And that was that. Twelve years, 10 months, and nine days from that Journal of Clinical Investigation paper.1 Affiliation: 1The Wistar Institute, Philadelphia, PA Dr. Lidia Schapira: Welcome to JCO's Cancer Stories: The Art of Oncology. I'm Lidia Schapira, Associate Editor for Art of Oncology, and Professor of Medicine at Stanford University. And I'll be the host of this show. Cancer Stories is brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows including this one at podcast.asco.org. With me today is Dr. Dario Altieri, president, and CEO at the Wister Institute. We'll be discussing his Art of Oncology article: Wall Street Doesn't Believe in This Target. Our guest is a named inventor for patent number 2,699,794. Titled: Mitochondria Targeted Anti-Tumor Agents. Dario, welcome to our podcast. Dr. Dario Altieri: Thank you so much for having me, Lidia. It's a great privilege. Dr. Lidia Schapira: My first question to you and to our authors is this, people who enjoy writing are usually also readers, what are you reading now? Dr. Dario Altieri: Well, absolutely it has been a passion of mine since the floods. I am an absolute avid reader of novels, and history, in particular, contemporary history and modern history. Those are my favorite topics. Dr. Lidia Schapira: Do you read in English, Italian, or other languages? Dr. Dario Altieri: I typically read in English, even though some of the Italian literature is best read in the native tongue. And so, I am still attached to that. Dr. Lidia Schapira: You're clearly a very accomplished scientist. But tell me a little bit about your writing in this particular area in what I'll call creative nonfiction. How has this writing helped you perhaps process experiences or communicate with others? Dr. Dario Atieri: It has been, it's been a passion of mine for a very long time, I think. In finishing up college, of course, my major was contemporary literature and philosophy. The question was whether to continue on in a classic literature career or go to medical school, probably the wrong choice was made. But it has remained with me for a very long time, and it's a form of expression that I truly enjoy. In writing, this particular contribution was a bit transformative for me. It doesn't happen every time that you write a scientific article to express a little bit about yourself and your passions and dreams. Dr. Lidia Schapira: Let's talk a little bit about your passions and dreams in this article. You described an intensely personal journey of 12 years that led to the discovery or the availability of this drug now in the clinic. When did you think that you wanted to share this story with your colleagues? And tell me a little bit about the process of writing this article? Dr. Dario Altieri: It has certainly been a roller coaster experience. I would like to describe it as life-defining and life-changing. I've learned so much and so many things, not just about the process, but also a little bit about myself. I recognize reaching the clinic, especially in a phase one trial, is really just the beginning. But for me, as a basic scientist, somebody who has seen his last patient in the 13th century. As a basic scientist, that was a little bit of a milestone, and I wanted to share what it took, the experiences that I lived through, especially with our youngest colleagues, scientists, and doctors, starting their own careers in oncology, whether it's basic research, clinical research, translational research, I really don't think it matters. And so, issues of resilience, staying the course, passion, and not really giving up are the parameters that I had hoped to convey with this contribution. Dr. Lidia Schapira: In your article, I was so impressed by how you used humor, often self-deprecating humor, and the particular narrative style and writing style that you chose and defended as you were revising it. You know, this choppy phrasing, a staccato, and you said, this is what it feels like, how can I pack it into a small number of words and describe it all? Tell us a little bit about how you allowed your imagination to take over and how you found the proper voice and style for this particular narrative. Dr. Dario Altieri: Again, it's been a thrilling experience and it's been a thrilling experience to answer to the editors and the reviewers of the JCO, who provided incredible insightful comments. The challenge was, how do I tell a story without sounding obvious, fright, or expected, and more importantly, without sounding boring? And I think to paraphrase one of our reviewers about this journey. What the reviewer said, the author, that would be me, has encountered many of the absurdities of the path in drug development, something that we don't talk about too much because it's been the realm of a drug company for the longest time. And so, I wanted to try to capture that absurdity in a positive way. Things that the reviewer indicated, may be second nature to the pharmaceutical industry, but for academic investigators, that's been publicly funded for 30 years, is not second nature and is unusual, and is a world all in itself. And so, that was the impetus of trying to use literature advice on short sentences that are really intended to convey the impression of the moment that was what I tried to accomplish. Dr. Lidia Schapira: Well, you certainly picked a catchy title, and we have not published this sort of article in Art of Oncology before. For our listeners, tell us a little bit about why Wall Street doesn't care about your discovery? Dr. Dario Altieri: Unfortunately, I think, I mean, I don't know for sure. But I think that dealing with this particular molecule, heat shock protein 90 in the clinic has been difficult. Hsp90 has long been recognized as an important cancer target. There have been several generations of small molecule inhibitors that have been tested in the clinic. And unfortunately, I hope I'm not offending anybody, but unfortunately, the clinical results of those studies, and some of them moved all the way to really large phase two trials have been disappointing. And so, that is the idea that perhaps this was a dead target. And therefore, trying to leverage industry or biotechnology interest around it was quite a remarkable challenge. Dr. Lidia Schapira: What message do you want the young investigators to take away from your story in terms of the collaboration between academia where thoughts start, as you say, in your article, and all of the rest of the partners that you actually need it to bring this discovery and this idea to fruition? Dr. Dario Altieri: Lydia, this may sound trite, I really hope to convey one simple notion. It's not even a message, it's a very personal account. And that is don't give up. If you have run the controls. If you have done your experiments enough time. If you're convinced of the results, if you explore alternative explanations, and you keep coming back to the same conclusions, go for it. That has been a little bit of my own personal experience and if there are things that you don't know about, that's perfectly fine. Actually, that is the fun of the process, and the things that I didn't know about drug development, I can fill in the encyclopedia. I've learned some of them through people who have been doing this for a living, for a very long time. And that has been truly inspiring for me, a life lesson and professional lesson about how we can think of a drug target that has been discounted and remain true to the core value of strong basic research and try to advance that to the clinic, whether this will ever become something useful for our patients? I don't have the faintest idea. I certainly hope so. But that would be the experiment that is being done right now in the clinic. Dr. Lidia Schapira: In your article towards the end, you just give us two little glimpses into something that is personal and meaningful to you by telling us that there's an anniversary of a loss, the passing of your mother from cancer. Can you tell us a little bit more about that, and why you chose to put that sentence just where you did? Dr. Dario Altieri: I didn't know if anybody would have noticed, frankly, so I appreciate you bringing it up, Lidia. It's been a very personal journey for me as well. Both my parents died of lung cancer. They were a different generation. Both were heavy smokers. I remember those dates very well and I remember the void that they're passing is created. And so, I thought it was an interesting circumstance, that in fact, the first patient was enrolled in a clinical trial, the notion about that and of course, I am technically conflicted. So, I am not supposed to know anything about what is happening in the clinic. But it was interesting that the first notion about the first dosing came on that day, on January 10. Dr. Lidia Schapira: Well, I'm sure other readers will notice that too, the timing of that in the article and the fact that there was some emotion implied, I think, in how you chose to end your story by saying that this had happened in the clinic, but somehow, you were not there, that you had to be removed. Tell us a little bit more about that, about why you needed to be removed from the clinical site and why do you talk about yourself as a former doctor? In my mind, once you are you always are, but somehow you feel that you need to make the distinction. What does it all mean to you? Dr. Dario Altieri: Well, Lidia, let me just say you don't want me in the clinic right now. At 64years of age, like I said that the last patient was a very long time ago. I have to say, sometimes I miss those days, just as a personal account. I need to be removed because I'm technically conflicted on the trial, I was the IND holder, and then the FDA asked me to transfer the IND to the clinical investigator as proper because I'm not involved in patient care or research, in this particular case. And technically, because I am the inventor on a patent, I could potentially stand to benefit financially from the results of the trial, something that is certainly not on my mind, but that I have been reminded of. And so, I try to stay away as much as I can. Obviously, I think about this every day. But whatever information I can gain, that I can gather from my colleagues across town will be wonderful, but I'm not the one initiating those calls. Dr. Lidia Schapira: So back to the humorous side of your essay, you say that you've learned to be a telephone operator and a mailman, and a whole bunch of other things. Have those lessons been useful to the other aspects of your life? Or do you see that as a total waste of your time? Dr. Dario Altieri: Not at all. Not at all. I have been an incredible component and I think I was trying to be humorous and to take myself seriously, but not too seriously. But in fact, maintaining that level of interaction, particularly with aspects of the work that I've never encountered, for instance, regulatory aspects of an early-stage clinical trial with the Food and Drug Administration, that has been part of the life journey and I only have very good things to say about my experience. You know, it's been interesting, Lidia, being part of the experience of being a telephone operator and a mailman. I had this sense, and I could be completely wrong, but I had this sense that people out there want to see us taking small risks. They want to see testing new drugs, they want to see new targets being somehow examined, developed, if at all possible. I had the sense that there was support, you know, for the idea, and this was an entirely publicly funded program. I funded both the preclinical and now the clinical trial of Gamitrinib out of the American taxpayer's commitment and in many different study sections, in dealing with the FDA, in dealing with other regulatory consultants, I always get the sense people who wanted to help, then had perhaps the mindset, okay, we don't know whether this is going to work or not but let's give it a try. Let's give it a shot. It was wonderful, that was an absolutely awe-inspiring experience. Dr. Lidia Schapira: I'm glad they did and I'm glad you shared your experience with all of us. Is there something else that you'd like our listeners or your readers to know about you or this story? Dr. Dario Altieri: I just would like to say that I would do it again, 12 years, I would do every step of the way but I think I'm done. If I were to start over, I'll do it again, but I don't think I'm ready to do it again with another target. Dr. Lidia Schapira: And with that, I want to thank you and I want to thank our listeners. Until next time, thank you for listening to this JCO's Cancer Stories: The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode of JCO's Cancer Stories: The Art of Oncology podcast. This is just one of many of ASCO's podcasts. You can find all of the shows at the podcast.asco.org. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product or service organization activity or therapy should not be construed as an ASCO endorsement.

A physician attempts to ease a patient's pain, a painful moment somewhat eased by the joy of music. TRANSCRIPT SPEAKER 1: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. [MUSIC PLAYING] RICHARD LEITER: Ode to Joy. "Is now an OK time?" I asked as I quietly entered the dimly lit room on a Saturday afternoon. "Yes, we've been waiting for you," my patient's wife Julie responded in the same calm, composed voice she had maintained all week. "Before we start, what questions do you have?" "I think you answered all of them this morning. I'm ready. Tom is ready. We just don't want him to suffer anymore." "OK, we'll get started." When I was in training, I had seen my preceptors initiate palliative sedation, but this was my first experience doing so as an attending physician. After being dormant for so long, my impostor syndrome returned. Though I was confident that I was taking the clinically-appropriate next step, I was nervous. I asked Tanya, our charge nurse and the nurse who was primarily caring for him over the last few days, to draw up the syringe. She did so with practiced confidence and handed it to me. I held it between my fingers, wondering how slowly I would need to push it to ensure the 2 milliliters of midazolam went in over a full five minutes. Tanya cleaned off the side port of his IV. I twisted the syringe into place. I looked up at Julie. She squeezed Tom's hand. I had first heard about Tom nearly a week earlier, when my colleague was handing off the service to me. "He's in his 50s, metastatic cancer. He was home on hospice and came in yesterday with uncontrolled pain. We started him on ketamine and he looks much better. The plan is to wean his ketamine, increase his methadone, and get him back home, hopefully in the next day or two." Stoic from years of pain from cancer eating away at his bones, Tom lay in bed with his eyes closed, his furrowed brow the only sign of his ongoing agony. When the nurses tried to move him, he screamed. After we weaned his ketamine, his pain quickly worsened. We increased methadone and hydromorphone. Neither gave him adequate relief. We restarted ketamine, but it proved to be no match for his pain. On rounds one morning, Julie asked if Tom could make it home. I told her I didn't think so and explained how worried I was about his pain. If we sent him home, I was concerned the pain would force him to come right back. Julie told me her kids would be disappointed, but that they'd understand, as she did. Easing Tom's suffering was more important. The hospital bed his family had set up in the living room would remain empty, a physical manifestation of cancer's unending cruelty. The hospital bed his family had set up in the living room would remain empty, a physical manifestation of cancer's unending cruelty. We talked about what would come next. If further titrating his medications proved ineffective, which I worried it would be, we would need to consider palliative sedation. "Whatever you need to do," Julie responded, her voice barely betraying the exhaustion I imagine she was feeling. Palliative sedation is a procedure used to relieve refractory suffering in a terminally-ill patient. Clinicians carefully sedate the patient, often to the point of unconsciousness, to relieve symptoms such as pain, nausea, shortness of breath, or agitated delirium. It is a procedure of last resort, and in our hospital, requires the approval of two attending physicians and the unit's nursing director. Though palliative sedation may shorten a patient's life, ethicists and clinicians have long regarded it as acceptable because its goal is not to hasten death but rather to relieve suffering. This is known as the doctrine of double effect, by which an action with at least one possible good effect and at least one possible bad effect can be morally permissible. Back in his room on that Saturday afternoon, I looked over at Tanya, the nurse, then at Harry, my fellow, who had been caring for Tom all week. I took in a breath under my mask, then slowly began to inject the contents of the syringe into his IV. In the quiet, I could hear the music coming from Julie's phone, which she had placed on the pillow beside his head. A pianist played a slow, mournful rendition of the final movement of Beethoven's Ninth Symphony, the Ode to Joy. In my head, I sang along. (SINGING) Joyful, joyful, we adore thee. I went to a traditionally Anglican school. 600 boys of all faiths and backgrounds, we'd rise each morning in assembly and sing hymns together. We cheered, yelled, and thumped on our pews-- a few minutes of raucous togetherness before we devolved into the usual bullies and cliques for the rest of the day. Tom's room couldn't have been more different. He remained completely still. Though Julie held his hand, he was alone, as we all felt in that room. (SINGING) Hearts unfold like flowers before thee, opening to the sun above. I felt the soft resistance of the syringe's plunger hitting the barrel. I looked back up at Tom. His chest fell, but didn't rise. I waited. He didn't breathe. The music slowed down. I felt Harry's eyes pivoting back and forth between my face and Tom's chest. I fixed my eyes on Julie's hands wrapped around her husband's. Despite the tension of the last week, she was calm, gentle. I matched my breath to hers. If she could exude such peace, so could I, I thought. I noticed Tom's hands. He had a piano player's fingers, long and slender. I pictured him sitting at the piano in their living room. I wondered who would take his place on the bench. I wondered if he could hear the song playing beside him. Had he and Julie chosen it for this moment? Did it bring back joyful memories, as it did for me? (SINGING) Melt the clouds of sin and sadness, drive the dark of doubt away. He didn't breathe. Did my first attempt at palliative sedation become euthanasia? Even if so, was this OK? I rehashed our conversations from the last few days. We talked about the risks. I went over the dose. Double effect, I reassured myself. Even so, as bedside nurses have told me, it's easier to talk about philosophy when you're not holding the syringe. I thought about how I would explain Tom's death to Julie. I wondered if she would be angry, upset, relieved? With the help of my outpatient colleagues, they had spent years preparing for his death. His financial affairs were in order, and he had done legacy work with his kids. More than nearly anyone I had cared for, they were ready. Were we? Was I? (SINGING) Mortals join the happy chorus which the morning stars began. He breathed in. Not a grand gasp, a slow, soft inhalation. Tom's hand flexed ever so slightly around Julie's. In my head, I thumped a pew. [MUSIC PLAYING] SPEAKER 2: Welcome to "JCO's Cancer Stories-- The Art of Oncology," brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org. SPEAKER 3: The guest on this podcast episode has no disclosures to declare. [MUSIC PLAYING] LIDIA SCHAPIRA: Welcome to "Cancer Stories-- The Art of Oncology" podcast series. I'm your host Lidia Schapira. And with me today is Dr. Richard Leiter, physician and member of the Psychosocial Oncology and Palliative Care team at Dana-Farber Cancer Institute in Boston and the Brigham and Women's Hospital. Welcome to our podcast. RICHARD LEITER: Thank you so much for having me. LIDIA SCHAPIRA: It's a real pleasure. You submitted a beautiful narrative piece called "Ode to Joy." And I'd like to start today, Richard, by just focusing first on the case that you present to us. Let me tell you how I understand Tom's history, and then you can correct me if this is not the way that you'd like him to be understood. And remember, Tom is a man in his 50s who's lived with metastatic cancer to bones for years. In your narrative, you're very careful and document the fact that you've worked with many members of your palliative medicine team for a long time, that there had been many efforts to control his pain, his suffering, and he had to be hospitalized for pain management. He was already receiving home hospice care. There was a bed in the living room in the center of the family home. And he had a very supportive family and a wife that we'll call Julie at bedside. Is that the proper framing for the story? RICHARD LEITER: Exactly. Yep. Yeah. I think what I would add is that the goal was really to control his pain and get him back home. LIDIA SCHAPIRA: So now you're there as the fresh attending in palliative medicine, and you're called in, and it becomes quite clear to you after a few days of changing his medications that the pain is refractory. And that it-- you note here that he screams when he is moved, that the level of pain reaches what you have called agony. So tell us a little bit more about how a palliative medicine consultant or physician approaches this kind of situation in hospital today. RICHARD LEITER: Yeah, no. Great. Thanks so much. So we were, I would say, lucky enough to have him on our intensive palliative care unit, where we're caring for patients with difficult and sometimes refractory symptoms at any stage of the disease. So not only for end of life. But we do see a number of cases like his every year, every few months, where someone is getting closer to the end of life. The goal is to really focus on intensive symptom management. And their symptoms are challenging to control. So I think the first step, always, is a good history, right? Where is this pain coming from? What treatments have they tried already? What's worked? What hasn't? We're going to titrate medications, but select medications based on that and titrate them. I think someone who has been involved with my outpatient colleagues and has been receiving hospice services at home has often gone through many treatment modalities. So it's really taking what they've been on before and starting to add to it. So for Tom, I had inherited him from one of my colleagues, who had admitted him a couple of days earlier. And at that point, he was already on a hydromorphone infusion and ketamine, as I talk about in the piece. Ketamine had been started, hopefully, as a bridge to get him back home. And he had been on methadone, which is one of our most potent agents for, not only nociceptive pain, so our basic kind of bony pain or visceral organ pain, but also if there's pain with a neuropathic component. Methadone is an opioid that can be particularly effective there. So I think it's saying, OK, well, have we hit all of our receptors in managing their pain? Are we managing the anxiety on top of that? Are we doing everything we can? Are there procedures that we could do to help with their pain? Sometimes we're talking about intrathecal pumps for instance. And obviously, that's a more involved discussion. How much time does someone have left? Are the goals really to put them through a procedure in order to get their pain under control? But we frequently work with our interventional pain colleagues to tease out whether a procedure would be helpful for a particular patient. So those are the thoughts that always go through my mind when I'm approaching someone with severe cancer-related pain. LIDIA SCHAPIRA: So this is a very thoughtful approach. And I think one of the messages is that it seems palliative medicine and pain management are integrated into the care of patients with advanced cancer, which is a very important message for our listeners and our readers. And here you are, you have all of this, you have good communication, it seems, with your team members, with the patient's family, and there's nothing more that you can think of doing. And you're now starting to think about interventions that we normally don't think of, except as a last resort. Bring this to the bedside. Tell us a little bit about the recommendation for palliative sedation and when that's indicated in care. RICHARD LEITER: Yeah. So palliative sedation, as I write in the piece, it's a measure of last resort. And certainly, in our hospital's protocol, it explicitly states it's when all other options have been tried. As we start to integrate more options, it's always a conversation we're having among our team-- is when is palliative sedation truly indicated. How many boxes do we need to check before going down the palliative sedation route? And I think-- so we started to think about-- we had him on ketamine. We tried to wean him off, it didn't go well. We restarted ketamine. We started dexmedetomidine, which can be useful. Precedex, the brand name, they oftentimes use it in the ICU for sedation, but we find that it can be helpful in cases of refractory pain as well. And my practice has been-- and though I haven't gotten to palliative sedation until this case-- when I'm thinking about Precedex, I'm also starting conversations with the patient or their family, and certainly our team, about palliative sedation to say if this doesn't work, this is where we're headed. LIDIA SCHAPIRA: And why is this situation so difficult, so personally anxiety-provoking for you? You do use words that convey that you are feeling nervous, or perhaps even anxious. Tell us why. RICHARD LEITER: I think it's-- relieving our patient's suffering, relieving their families suffering is certainly the core of much of medicine and very much the core of what we do in palliative care. And I think to have someone in just such a terrible situation-- putting aside the pain, right? This is a man who's dying of his cancer, has a relatively young family. That alone is an awful situation. And my job is to make that situation a little bit less bad, is to ease the suffering. LIDIA SCHAPIRA: And there's something about this particular procedure, however, that adds a level of intensity and nervousness for you, and that is that perhaps-- you can describe this better than I-- but the fact that in some cases, this could have the unintended effect of actually causing respiratory depression or even hastening death and something that you have explained in your piece, if I understood you correctly, as the double effect. Did I get that right? RICHARD LEITER: Yeah, that's right. So the worry or one of the considerations with palliative sedation is that it could hasten someone's death. Oftentimes, the doses of the medications that we're using, if we're titrating them slowly, there are studies that show that it doesn't necessarily. I do think, though, when we tie it into withholding artificial nutrition and hydration, in that case, had the person been awake enough to eat and drink before, we do know that it would probably hasten their death, right, from that part of it, but not necessarily the sedation aspect. So double effect is basically saying this is ethically OK-- and there are a number of criteria. But if we are intending the good effect and not the bad effect and that it's proportional to the gravity of the situation so that not every patient who comes in with bad pain undergoes palliative sedation. LIDIA SCHAPIRA: My favorite line, Richard, in the piece-- and one that I now have read probably dozens of times-- is this-- "the double effect, I reassured myself. Even so, as bedside nurses have told me, it's easier to talk about philosophy when you're not holding the syringe." And that just gives me goosebumps thinking about it. What did you feel when you were holding the syringe? RICHARD LEITER: Exactly as I wrote about. There's all of the cognitive processes going on. And I ran it by another attending, I ran it by the nursing director, I ran-- everyone was on the same page, that this was medically indicated in this situation. And yet, when I'm standing there in the room-- patient, his wife, my fellow, and the nurse-- and I'm the one holding the syringe, watching the medication go in, it felt completely different to me. And there's a power that comes with it. In one sense, I felt like I was there for my patient. Here I am, standing here doing this to ease his suffering. And then the other, the unintended consequences of the sedation are real, and that feels different when you're the one physically doing it. LIDIA SCHAPIRA: I think one of the incredible gifts you've given us as readers is to share this with us and really adds a different dimension to the discussion of the complexity of what it is to be present, not just as a witness, in this case, but as somebody, as you say, with a power to really control so many things in the situation. And I thank you for sharing that with us. And question to you is, did writing about it in any way help you process this emotional, very powerful experience? RICHARD LEITER: Absolutely. I write to process. I write when I feel like I have something to say. And oftentimes, I write when a particular moment struck me. And I think that that moment, sitting there, pushing the medication, waiting for that breath while the music was playing was so poignant for me that I walked out of the room and I remember thinking to myself that night as I was decompressing on my walk home from work, I think I need to write about this. LIDIA SCHAPIRA: So thank you for writing about it, and then, of course, for submitting for review and to share it with people. Let me bring the music in. Music is such an important part of our sensory experience. So as you were holding the syringe, Julie, Tom's wife, puts the phone on the pillow and she plays the piano version of Ode to Joy from Beethoven's Ninth Symphony, which I want to play for our listeners now. [MUSIC PLAYING] So Ode to Joy meant something, clearly, to Tom and Julie. And you said that you watched-- perhaps you were watching for his reactions. But tell me a little bit about what it meant to you. You sprinkled your essay with the lines for the choral for Ode to Joy, which has a religious significance as well. So tell us a little bit about that. RICHARD LEITER: Yeah. So I grew up in Toronto. I went to an all-boys school there that had a traditionally Anglican background, though I'm not-- I'm Jewish. We would sing hymns. And over the course of my time there, the hymns became less denominational and more multicultural and inclusive. And it was a moment-- it was a nice moment where everyone got into it. It's 600 boys singing, and so I still remember the words to Ode to Joy vividly. Anytime I hear it, I can replay the words in my head. And I found myself, in those moments in the room, really thinking about it. And the words were still-- as I was processing and watching Tom and Julie and making sure I was pushing the medication at the right speed, there was this soundtrack. It's a strange moment too, because they're good memories for me, and yet I'm in this incredibly solemn, intimate moment in my patient's room. LIDIA SCHAPIRA: And so as we're getting to the end of the piece and there's all of this tension that you've built up in the writing and the narrative-- and here you are, you're waiting and you hear the music and so on-- and then you finally let the tension out and he breathes. It's not a huge breath, but it's a soft, slow inhalation. And you see that the hand is flexed slightly around his wife, so he's still breathing. And you finish with this line that you say, "In my head, I thumped a pew." And I have to ask you about that. What does that mean to you? RICHARD LEITER: Yeah. So in that moment, it was relief, is what it was. Just the sense of, OK, this went-- it's my first time doing this, and this went OK. He appears more comfortable. He is still breathing. This is OK. And it just brought me back when we would thump the pews as we were singing the hymns. Our principal did not like it, but-- [LAUGHTER] But I think it was just that it was relief. I hesitate to say it was joy because I don't think there's joy in a situation like that, in the room. But there was a sense of satisfaction maybe, or professional satisfaction, the, OK, this is what we can do. And as bad as the situation is, there was something that we could do to make him somewhat more comfortable. LIDIA SCHAPIRA: Well, I certainly learned a lot. I wonder if now that some time has passed since this event, if you have any additional reflections on how this story has impacted your professional delivery of care, or perhaps the way you teach others, and if there are any parting comments that you'd like to leave us with. So I haven't had another case where I've needed to do palliative sedation, though we've thought about it in a couple of cases. I do think it's helped me, when I talk about palliative sedation with our trainees, to add the emotional valence. I think I was pretty good at talking about the importance of making sure everyone's on the same page and talking to the patient and the family and nursing staff. But to really talk about the significance of that moment for us as clinicians and how it does feel different-- at least it did for me-- and I think drawing on my personal experience is helpful in teaching it to the fellows that it's OK to feel like that when you're doing this. LIDIA SCHAPIRA: There are moments in medicine-- certainly in what you do-- that are really difficult. And this, probably, I would imagine, ranks as one of the top things. And it should never be easy. It will never be easy. The day that you think it's easy, you need to find something else, right? RICHARD LEITER: I think that's right. I think that's right. LIDIA SCHAPIRA: Well, thank you so much, Richard. You made me laugh, you made me cry reading this, and I thank you very much. My last question is, have you had a chance to talk with Tom's widow Julie about what that moment felt like to her? RICHARD LEITER: I have not, although I hope to in the near future. LIDIA SCHAPIRA: And that will be your next piece for us. [CHUCKLES] All right. Well, thank you very much and until the next time. Hope you all enjoy reading Ode to Joy. RICHARD LEITER: Thank you so much. SPEAKER 1: Until next time, thank you for listening to this "JCO's Cancer Stories-- The Art of Oncology" podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple Podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode. "JCO's Cancer Stories-- The Art of Oncology" podcast is just one of ASCO's many podcasts. You can find all of the shows at podcast.asco.org. [MUSIC PLAYING]

A mother mourning the loss of her daughter discovers that she has lost something else important to her. TRANSCRIPT SPEAKER 1: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. SPEAKER 2: Welcome to JCO's Cancer Stories, The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org. ELIZABETH CONROW: Access Denied, by Elizabeth Conrow. I lost my daughter, Amanda, in 2015. She was diagnosed with a brain tumor at age three and was in treatment for 2 and 1/2 years. Less than two weeks after she died, friends and family were getting on with their lives, but I was still in shock. I couldn't believe that Amanda was really gone. Early in the day, I looked at my kitchen table and tried to imagine her eating a bowl of rice, an unusual breakfast for a five-year-old. But that was Amanda. My eyes filled with tears as they rested on the empty chair. She was really gone. In that moment, standing in the kitchen, I struggled to remember every detail of who she was. It felt like the memory of her was slipping away. My heart beat quickened, and my mind raced with compulsive nagging thoughts. How tall was she the last time we were in the outpatient clinic? How much did she weigh? I realized I would never be able to put her on a scale again or mark her height on the cupboard door. I fear that this information would be lost forever, just like Amanda. I moved to my computer and started to log on to our hospital's online patient portal to see if I could find answers to my questions. How many times had I logged into this system looking for Amanda's test results or to message one of her doctors? How many times did it serve to confirm appointment times or remind me of medicine doses? I clicked the Sign In button, and my heart stopped. I couldn't get in. Instead of viewing her chart, I saw an alarming red stop sign and a message saying "access denied." I stared at the screen in disbelief. Just two weeks after losing my daughter, I faced yet another heartbreaking and unexpected loss. I no longer had access to Amanda's medical records. I no longer had a connection to her medical team and the hospital family I had grown to love and care for. Everything Amanda had been through for the last 2 and 1/2 years was gone. It was as if she never existed. She had vanished. I was caught off guard, deeply saddened, and utterly unprepared to have this connection to the hospital and this connection to Amanda ripped away. I was confused and embarrassed by my emotions. I certainly didn't need this access. But I was devastated that it had been taken away. I reached out to my daughter's oncologist to ask how and why the patient portal had been turned off. I let him know that it was really important to me to be able to view Amanda's records, at least for a time. It had never occurred to him that a parent might want to see this information again. He explained that it was a system designed safety measure that automatically turned off access to an account once a patient had died. I was the first parent to reach out to him with this question. Amanda's oncologist immediately contacted the online records office to reactivate her chart so I could search out answers to some of my questions. It brought me so much comfort to be able to go back in and revisit her medical journey. As I thanked her doctor, I shared with him how important it was to protect families from this type of trauma. I didn't want another family to experience this pain. He listened and helped put a manual reactivation system in place. Going forward when a child died, the online records office would manually reactivate each pediatric account individually. It wasn't a perfect solution, but it was a step in the right direction. It has been six years since Amanda's passing. I am now the bereavement coordinator at the same hospital where she received care. When I started in this role, I was surprised to learn of several families who, like me, had been denied access to their child's medical record. Hadn't the hospital resolved this issue years ago? I was frustrated that our institution hadn't found a better solution in the six years that passed. Last spring, as I followed up with bereaved families from our hospital, I had a conversation with a mother, Diane, that was hauntingly familiar and heartbreaking. Diane and I spoke on the phone shortly after the loss of her son, Evan. As we wrapped up our call, almost as an afterthought, she sheepishly asked about Evan's medical records being deactivated. I was immediately brought back to my kitchen table and the pain I felt when I experienced this secondary loss just two weeks after losing Amanda. I knew why Diane felt silly asking about this. And I deeply understood her need to log in. Diana explained that she was creating a record of everything Evan had been through, every transfusion, every chemo treatment, every inpatient and outpatient visit. And she could no longer complete that task. She shared her experience with me. I know for me, it was really difficult to wake up that very next morning, literally only about 12 hours since he died and not be able to look at it. Even though I know there had been no additional tests run since the last time I had checked, it was my morning routine to look at it. I would check it each morning, even before I got up. It had been that way for months while we were inpatient. First, looking at his ANC and counts, and then in the final month and a half, checking his bilirubin and liver numbers. There was always that hope that things were going to improve. This would be the day. So that first and subsequent time was just a blunt reminder that he was gone and there would be no more checking. I wanted to go back and look at his results, too. Oddly, I thought it would make me feel closer to him and closer to the routine I had while he was alive. Diane wanted to feel closer to her son. I wanted to feel closer to my daughter. Accessing a child's online medical portal is one way a parent begins to come to terms with this impossible loss. Snaman, et al, 2016, suggest that parents who are grieving significantly benefit from the creation and continuation of bonds with a child who has died. Revisiting a child's journey through the lens of the medical portal helps strengthen that bond. As I looked through Amanda's chart and remembered various times we visited the hospital, it helped me picture her more clearly. And it helped me feel a connection to her that I was deeply longing for. Looking through a child's medical record, while painful, can be part of healing and connection. In addition to creating bonds with a child who has died, the medical portal helps parents stay connected to the hospital and the medical team that cared for their child. According to additional research by Snaman, et al, 2016, bereaved parent's benefit from the ongoing support of a hospital throughout a time of grief. When a child dies, the secondary loss of the medical community can leave families feeling abandoned by those they have come to trust and depend on. Anyone who had taken care of Amanda felt like family to me. Sending messages to Amanda's medical team after she died provided a feeling of familiarity when everything else around me was spiraling out of control. A continuing connection with the medical team through the online portal can positively impact grief outcomes for bereaved parents. Accessing a child's medical record provides a grieving family with an easy way to communicate with, and ask lingering questions of the medical team. Access to medical records should not end when a child dies. The 21st Century Cures act acknowledges the need to provide patients with open notes and immediate access to medical information. As we implement real-time access for living patients, continuing access after a loss should also be considered essential. Dr. Alan Wolfelt, from the Center for Loss, discusses the need to say hello to one's grief and welcome it before saying goodbye to the person who died. In those early months, saying hello to grief meant reading through Amanda's medical records, communicating with her medical team, and uncovering every connection I had to her while she was alive. In some small way, logging into Amanda's medical portal and discovering that she was 42 inches tall and weighed 41.2 pounds brought me immeasurable comfort. As parents grieve the loss of a child, comfort and connection should be readily available without having access denied. SPEAKER 3: The guest on this podcast episode has no disclosures to declare. SPEAKER 4: Welcome to Cancer Stories, The Art of Oncology podcast series. With me today is Elizabeth Conrow, bereavement coordinator at the University of Rochester Medical Center and the author of Access Denied. Welcome to the program, Liz. ELIZABETH CONROW: Thank you so much for having me here. It's an honor to be here. SPEAKER 4: It is our pleasure. And first of all, let me start by saying I was very moved by the piece. And I'm so sorry that you lived through this experience. And really interested in knowing how you transformed your personal grief into now, your profession. ELIZABETH CONROW: Sure. Well, it's definitely been a process. Obviously, as a family, we never thought we would be down this road. I never thought I would have a child who had cancer. I never thought that I would have to go through the grief of losing a child and then comforting my own family, and my husband, and those around us through that experience. And I can tell you that for the first couple of years, I really didn't feel equipped to do anything. I felt like I lost my confidence in anything that I had an ability to do prior to this. Simple things like making a meal for someone who was sick became way too overwhelming to even consider doing. So it was definitely a process of years. But when the opportunity came up to work at Golisano Children's Hospital, the same place where Amanda had been cared for, the timing was right. And I knew that it was a great step to take and a way to honor Amanda's life, and really in some way, offer just a little bit of support and comfort to bereaved families, because I understood a little bit of what maybe they were going through. So it just seemed like a really good fit and a really good match for my experience at that point and a way to help and honor Amanda. SPEAKER 4: Let's start by talking a little bit about Amanda. Tell us a little bit about her and her story. ELIZABETH CONROW: Sure. Amanda is one of five children. So she was the fourth of the five. Very silly, loved to wrestle with daddy, had the biggest blue eyes that anyone had ever seen. She was just a delight and a joy. And when she was 3 and 1/2, she was diagnosed with a brain tumor. And we were in the hospital for a number of days. She had surgery and a full resection. And we were told that if after a resection and radiation it never came back, that we would be good. But that if it came back, it would likely be terminal. So we knew at the outset that this was-- we're not dealing with a cold or a headache. We're dealing with something pretty serious. So she went through the surgery beautifully. She went through all of her radiation treatments. We did a clinical trial of chemotherapy. And six months from when she was diagnosed, we really felt like we did well. She did amazing. And we were ready to walk away from everything and just celebrate really, kind of getting through this. And her very first follow-up scan two weeks after she was done with treatment-- her doctor, Dr. Koronas, called us and let us know the very devastating news that the tumor had returned, and it was all in her brain and down her spine and too many places to count. So six months from diagnosis, we knew that this was not going to end well. And we kind of had to struggle to prepare for that, as well as to recognize that in that moment, she was still Amanda. And she was still doing really well. But we knew that time would be limited. And so we had actually a very good year and a half with her, as much as you can say that. She went through additional radiation treatments. And we continued to try other chemotherapies to do what we could. But ultimately, in February of 2015, surrounded by her family in our home she passed away. And we then had a whole new struggle with grief and really, coming to terms with a new life and a devastating loss. But she was a joy. And she was a joy throughout it. So it was not all terrible. SPEAKER 4: She sounds like an extraordinarily little girl. And in your essay, you start by telling us that just after she died, I think a few days or weeks, you're thinking about her, and you want to access her medical record through the portal that you had gotten used to using all the time. And then as you're logging in, you get the signal that says "access denied." And that triggered a tremendous wave of grief for you or something. Tell us a little bit about that and what you did with that. ELIZABETH CONROW: Sure. I think I didn't realize at the time that I was really just trying to hang on to who she was, that I was trying to connect with her in some way. I mean, it was just two weeks after she had died. And I just-- I wanted access to see, what did she weigh? Goodness, if I could recreate her in the form of a stuffed animal, how long would she be? How much would she weigh? And when I went to log in, it was a horribly devastating loss. It really felt like all of the sudden, I knew in my mind she was gone, but logging into this wealth of information that contained all of her blood counts and numbers and information that we had access so often, to all of a sudden have that gone. It was just a punch in the gut reminder that she truly was gone and that her records had disappeared. And she just wasn't here. And I wasn't prepared for that. I really thought that I'd be able to go in and find the things I wanted to find and have peace about that. It was shocking to me. And I remember feeling so embarrassed like, how can I call her doctor and say, I lost this access and I really need it? When she's not here, there's no reason. I don't need it. He's going to think I'm crazy. But it was important enough to me that I reached out to him. And I said, you've got to help me. How can I still access this? SPEAKER 4: So what happened next? ELIZABETH CONROW: So he-- actually, I was pretty surprised. I was the first parent he said, that had ever reached out to him with this issue. And I thought, how is that possible? How is that possible? And I'm guessing other parents had experienced it, but didn't know what to do, didn't know where to turn. And he was very compassionate. And he reached out to our online medical team, our portal team, and tried to figure out a way to reactivate the account for me. And got that done very quickly. And I said, well, it's not enough that it's been reactivated for me. No other parent can go through this. We have to come up with a plan. And so he really did work very hard with our team here to come up with something that would hopefully fix the problem. And it did. I know many families then, had their access turned back on manually, through a manual process that they put in place here. But I know that in the last six years, there have been several families who went to log in and had this experience. And unless you've been there and unless you've been the parent on the end of losing a child and then going in and having more taken away that you didn't expect, you don't understand the pain of that. And so I think the driving force behind me really wanting to write this article was to say, I know that this isn't just my institution. I know this is happening across hospitals. I know that when a child dies, this access is turned off. And that really hurts families. And if there's a way to bring attention to that and say, hey, we can do better, we need to. SPEAKER 4: Now that you have this perspective, I know that you have actually developed some training for oncology fellows and staff to train them a bit to talk with bereaved parents. What are some of the lessons that you want people to learn? ELIZABETH CONROW: That's a great question. I'm working with another doctor here. It's an advanced communication training where we're helping young doctors share bad news for the first time. And it's amazing to me how afraid people are to approach the bereaved. And I guess, having been through it, I see now how poorly we really do bereavement and how afraid we are to kind of approach someone who's lost a child and just wrap our arms around them and say, I'm so sorry. I'm here with you. Everybody wants to fix it. And there's no fix. And people don't want to approach a bereaved parent and bring up their child, because they don't want to make them sad. And what many people realize is that our children are always on our mind. You're not reminding us of anything we're not already thinking about. I was pretty surprised after losing Amanda that someone could be on my mind all the time-- all the time when they're not here anymore. You know, you think about people here and there, time to time, people in your life. But once she was gone, she was right at the front of my mind and still is, every moment of every day. And so if you see a bereaved person, it's OK to mention their child's name. I actually-- I go to the dentist. And the woman who cleans my teeth, every single time I go, will mention Amanda. And I know it's intentional. And I know it's because she wants me to know that she cares. And so those kinds of simple acts that people do as a way of recognizing and honoring the child whose passed means so much to a bereaved parent. SPEAKER 4: Just listening to you and the emotion in your voice, I imagine it must have been difficult in a way to go back to the same place where Amanda was treated and now, work with the staff and the clinicians who treated her. Tell us a little bit about how you've managed those relationships? ELIZABETH CONROW: One of the things I've learned, and that's partly through the role I have now in supporting other bereaved parents is that everyone grieves differently. And I know there are some parents who, the first time they come back to the hospital, it's really, really hard for them. And it's almost like a PTSD moment. For me, I appreciated and cared about all of the medical staff so much that coming back here to me, was a need. I needed to get back here and find a way to connect with these doctors and nurses and the people who cared for Amanda so beautifully while she was here. In those first months of grief, I showed up at the hospital-- I remember there was one day I showed up, and I felt so lost. But I just needed to see those nurses and give them a hug. And I felt awkward and out of place, because suddenly, I'm here and she's not with me. But I just needed to be in a place where she had been and a place that meant so much to us. So coming back here for me, certainly had its hard moments. And there have been challenges with it. But it's been a place of comfort. And being able to talk about Amanda with other parents has really been a gift for me, because it's not an opportunity you have all the time, especially six years later to talk about the child who died. So it's been a gift. SPEAKER 4: What is it like for you to be with other parents now who are going through what you experienced? How does your experience of loss influence your role as a counselor for a newly bereaved parents? ELIZABETH CONROW: I do a lot of listening. I do a lot of listening. And there are some parents who I'll call and follow up with and check in on. And they're good. And they don't need anything. And to be honest, I think when we first lost Amanda, if someone called me and I had never met them before, I might say I'm good. I don't really need any support right now. I've got my family. But there are some parents who I will call, and they will talk to me for 45 minutes. And they will cry. And they will say, you're the first person I've been able to talk to about this, because you understand and you've been through it. And so I'm able just to listen. And when they say things that they think are crazy, I wandered into my son's room and I slept in his bed last night, I say, I understand that. I once found Amanda's socks in a travel bag. And when I found them, I pulled them out and I slept with her socks. So there are things that people think are crazy that I'm able to help them normalize some of those feelings and understand that it's OK. SPEAKER 4: I don't think it's crazy at all. You speak with such knowledge and also such empathy. I wonder if you can help us also understand how you see the clinicians now-- the doctors and nurses who are actually are caring for these patients-- how you see them react to the death of a patient and how they maintain their relationships with what the parents once the kids are gone? ELIZABETH CONROW: It's been very interesting, I guess you could say to be on the other side of this, right? I was on the parents side before, where I was able to receive kind of the love and comfort and support of those who cared for Amanda. And I was able to see them showing up at the funeral and the ways that they would reach out and send notes and cards. But now, being on this side working with many of those same people, I've been really struck, even during our weekly meetings when they talk about different cases and different families and the losses that they've had, how significantly it does impact them, and how much those families and those children really do mean to them. And you know, I've often sat there now wondering, well, what did they say about my family? What did they say about us? And not a conversation I can go back to and sit in on. But I'm just struck by how much they really do care and how much it extends beyond this just being a job for most of-- all of them. SPEAKER 4: Yeah, in your role now, in your professional role, what kind of changes have you implemented in the way clinicians and parents communicate, or the way the system communicates with parents? ELIZABETH CONROW: At our hospital where I work, we have probably around 80 or 90 losses a year. And I came into this and said, I can support these families. And I can follow up with 80 or 90 families in a reasonable manner. But really, we need more parents doing this. We need to expand kind of what we're doing. So I've been trying to work toward implementing a mentoring program of sorts, where bereaved parents who are a few years out in their grief can come alongside newly bereaved parents and really support them, one on one for a year or a year and a half to help them get through that time, so that it isn't just me. And as great as I am, I really know that we can do much, much better by parents if we expand kind of the support network that we have. So I've been trying to grow some of our bereaved parent base. And those who can give input on some of the things we're doing-- because I know bereaved parents have so much wisdom and so much they can share from their own experiences. SPEAKER 4: You sound like a force. I wonder, have you connected with other hospitals, other teams? Or is your-- are you concentrated on your hospital and your community? ELIZABETH CONROW: The greatest support to me, actually has been St. Jude. They have such a fantastic program. Their bereavement, their parent support is really outstanding. Actually, just this week, I was able to sit in on one of their parent mentor trainings to kind of learn, well, how do you train your people, and what do you do? And so that was fantastic. So I'm really grateful-- grateful for their support. So they've been really wonderful. SPEAKER 4: I imagine Amanda's passing really affected your entire family and the other kids. Can you tell us a little bit about how all the other kids dealt with their grief? ELIZABETH CONROW: Sure. I know at the time when Amanda was diagnosed, my oldest was 9, and my youngest was 9 months. So everybody was pretty little. And they went through that at a really young age. And then when she passed, my oldest was 11 and my youngest was 3. So they were still little. And they had been through what I consider to be significant trauma in those early years. And when things first happened, I mean, I had a therapist describe it to me as a children's mobile that hangs over their bed you know, that once it becomes imbalanced, it just tips on its side. And that's the way things felt at home for quite a while. You know, just nothing felt right and things felt out of order. But kids are so resilient and so forward looking. And my kids really did beautifully through it. And I had someone tell me, well, kids are going to revisit grief. And they're going to come back to it from time to time. And it'll surprise you. And I will say, that's so true. You know, I would think everything was going along OK and everyone was coping well. And then, my daughter Jessica, who was closest in age to Amanda, would come down at 10 o'clock at night in tears because she was thinking about her sister. And that would catch me a little bit off guard. And my oldest just went away to college. And she's now 18. And she's had some conversations with me lately just about everything they went through and really revisiting some of her feelings about it all. And so they don't really get over it. But helping them to kind of process it and work through it and really, just talk about her. We talk about her constantly. She's a part of everything we do. We still make her a birthday cake. So we just keep her memory alive and celebrate her life together. But grief for kids is certainly different, and it doesn't end. But they are definitely forward looking and really can handle more than I think sometimes we give them credit for. SPEAKER 4: And your husband and you I hear have also been involved in some activities to talk about this publicly or teach others. What was that like for you as parents? ELIZABETH CONROW: There are a few things that we've really wanted to help move forward in terms of childhood cancer awareness and things that people can do to really help bereaved parents. And I think there's just so much that people don't know or understand. Many people don't realize how underfunded childhood cancer is. So it just means a lot to us to be able to kind of get that message out now. SPEAKER 4: I imagine there's so much work to do. And as we've had this great opportunity to chat about Amanda to remember her, to think about your experience and the amazing work you seem to be doing-- are there any final comments that you want to share with our listeners? ELIZABETH CONROW: It's an honor for me to really share this experience. And that bereaved parents need support, and they need to know that people care and remember, even as time goes on. So just take good care of those who know who are grieving. And love one another. SPEAKER 4: Thank you so much. This is Liz Conrow, author of Access Denied, published in Journal of Clinical Oncology. Thank you very much. Until next time. SPEAKER 1: Until next time, thank you for listening to this JCO's Cancer Stories, The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode. JCO's Cancer Stories, The Art of Oncology podcast is just one of ASCO's many podcasts. You can find all of the shows at podcast.asco.org. [MUSIC PLAYING]

Dr. Hayes interviews Dr. Breitbart on his research addressing psychiatric, psychological and existential adjustment as well as symptom control in advanced cancer. Dr. Daniel F. Hayes is the Stuart B. Padnos Professor of Breast Cancer Research at the University of Michigan Rogel Cancer Center. Dr. Hayes' research interests are in the field of experimental therapeutics and cancer biomarkers, especially in breast cancer. He has served as chair of the SWOG Breast Cancer Translational Medicine Committee, and he was an inaugural member and chaired the American Society of Clinical Oncology (ASCO) Tumor Marker Guidelines Committee. Dr. Hayes served on the ASCO Board of Directors, and served a 3 year term as President of ASCO from 2016-2018. TRANSCRIPT SPEAKER: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. [MUSIC PLAYING] DANIEL HAYES: Welcome to JCO's Cancer Stories-- The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content, and offering enriching insights into the world of cancer care. You can find all of their shows, including this one, at podcast.asco.org. We have a special treat today in our podcast series in that I have the opportunity to interview Dr. William Breitbart. Dr. Breitbart is the Jimmie Holland Chair of Oncology at Memorial Sloan Kettering and the Professor and Vice Chair of the Department of Psychiatry at the Weill Cornell Medical College. And as far as I can see, Dr. Breitbart, you've never left New York City. But I will get the background. And you can tell us if you took a vacation or something one time outside the city. Dr. Breitbart grew up in the Lower East Side of Manhattan. He went to Brooklyn College, graduated in 1973, then medical school at the Albert Einstein College of Medicine. And then he did his residency in internal medicine at the Bronx Hospital and trained basically at Memorial Sloan Kettering. Joined the faculty there, and has been on the faculty ever since. He has a number of accomplishments, too many for me to really review it carefully. But he's been president of the International Psycho-Oncology Society and received their Sutherland Lifetime Achievement Award. He's been president of the Academy of Psychosomatic Medicine and received their Hackett Lifetime Achievement Award. And on a personal basis, my brother was also the president of the Academy of Psychosomatic Medicine. So I'm very proud of my brother and equally proud of Dr. Breitbart. He really is responsible for a number of enormous steps forward in our field, including psychotherapeutic approaches for palliative care of patients with terminal illnesses, especially cancer. He has been involved with what I saw you call, Dr. Breitbart, "hastened to death." I had learned it as assisted suicide. I'm going to ask you a question about that. I'm interested in your comments. And more recently, meaning-centered psychotherapy for the terminally ill And we'll talk more about that, too. So in addition, I have asked Dr. Breitbart if he would also give us insights into Dr. Jimmie Holland's life and her career. Sadly, she passed away before we had an opportunity to chat with her. She was one of my favorite people in the whole world. And I think everybody that knew here said the same thing. So we'll get some insights for those of you who didn't know Dr. Holland from this call as well. Before we start, Dr. Breitbart wants to declare that he's received honoraria from Novartis and has a consulting or advisory role with Novartis. Dr. Breitbart, welcome to our program today. WILLIAM BREITBART: Thank you Dr. Hayes, pleasure to be here. Can I make just one slight correction? I actually trained in both internal medicine and psychiatry at the Bronx Municipal Hospital, which is the Albert Einstein College of Medicine, in New York City Health and Hospitals Corporation's Public Hospital. So I trained in both psychiatry and internal medicine, jumping back and forth between the two, out of a state of confusion. And then I landed in Dr. Holland's fellowship at Memorial Sloan Kettering for a variety of reasons. The main reason was though that I had developed a thyroid cancer when I was a medical resident in the middle of my training. And then I went back to finish up more of my psychiatry residency training, I became the liaison to the Oncology Clinic at Jacobi Hospital, the Bronx Municipal Hospital. I did consultations for cancer patients. I ran groups for cancer patients and also ran groups for the oncologists and oncology nurses. And I was trying to educate myself on the subject of psycho-oncology or psychiatric oncology. It actually hadn't been named yet in those days. And the only literature I could find were papers written in oncology journals by Dr. Julie Holland. And so that's where I knew where I needed to go to become more expert in this area. That's the most superficial version of how I ended up at Memorial Sloan Kettering. I could tell you the more interesting version if you're interested. DANIEL HAYES: Well, actually, what you just covered was my first question. I was going to say this is about you, not about me. But my brother also did training in internal medicine and decided to go in psychiatry, and ended up in psychiatry liaison. And I think that's what makes you two, and others like you, powerful, is that if you go to France and you don't speak French, you're not going to be listened to. And if you come to a bunch of oncologists, and you don't speak internal medicine or oncology, we're not going to listen to you. And I think clearly to me, Jimmie Holland always knew what I did. And I think you have the same strength. I'd love to hear how you actually got involved with her. Yes. Please begin. WILLIAM BREITBART: I agree with you actually about that comment. It's very helpful to have had the training in both medicine and psychiatry. And, in fact, we've trained a few fellows who've done oncology fellowships and then done our-- and a psychiatry residency and then done our psycho-oncology fellowship as well. But the real story of how I ended up in this field starts in childhood, where a lot of stories start. But my parents were both Holocaust survivors from Eastern Europe, from Poland in particular. When the war broke out, my mother was 14 years old and my father was 17 years old. And my father's family were all killed. But he ended up surviving, hiding in the woods. And he became-- Polish forest-- and he became part of a partisan fighter group, lived in the Polish forest. And one day he went looking for food and broke into this farmhouse. And as it turned out, my mother and her parents were being hidden by a Catholic woman, who hid them in a hole underneath the stove in her barn. And my father broke into this farmhouse and discovered my mother and my maternal grandparents. It turned out they were related. They were second cousins. My father said, you can't stay here. It's not safe. You should come into the woods with me and 150 other people. My grandparents were too afraid to go. But they let my mother go. So at the tender age of 14 and 17, my parents were hiding in the Polish forest, where they lived for about three years, hiding from the Nazis, and then Ukrainians, and all sorts of people who were interested in killing Jews. And they finally, after the war, crossed over to Germany. They actually found my grandparents alive. And they crossed over the border to Germany, went into this displaced persons' camp outside of Munich and got married there. And then came to the Lower East Side in late 1949, early 1950. And I was born several years later. And I grew up in this home on the Lower East Side, as you pointed out. And I grew up in a home where the Holocaust also lived. I lived in this home where the Holocaust was in every room-- didn't have a room of its own. It was in all the rooms, on all the walls-- and all the pictures that had been saved of my family, that had perished, on all the religious articles that might have been saved, et cetera. So I grew up in this environment where I understood at a very early age, maybe four or five years old, that death and suffering were very real. And that we all lived in this space between life and death. My mother would ask me every morning-- when she gave me breakfast, she would ask me the question, why am I here? And the full question really was, why am I here and everyone else is dead? Basically, what evolved out of this was the transmission of this responsibility or I guess a burden-- for me, it was an inspiration-- for me to accomplish something of such significance and impact-- in the world of suffering in particular-- in the arena of people who suffer in the face of death. And it's going to be up to me to achieve something of such significance that my parents would be able to-- my mother would be able to turn around and say, well you see we had to survive because if I hadn't survived, there wouldn't be Bill Breitbart in the world. [LAUGHTER] So that was the mission. That was the burden. That was the inspiration. And I wasn't fully cognizant of it. But I was traveling this journey-- this route that took me through college, and loving science and poetry, ending up in medical school, thinking I'd be a psychiatrist, but then falling in love with medicine. Loving both psychiatry and medicine. What I realized what fascinated-- what fascinated me was how a human being can live a mortal, finite life. How do you-- as a person who develops a life-threatening illness, how do you continue to live? How do you have the strength, the courage, to keep on living? And what gives you purpose and meaning? And so I got myself to Sloan Kettering by reading the work of Dr. Jimmie Holland and Dr. Massie. And I found myself at Memorial. I put myself in a place, with a mentor-- a group of mentors-- a place where I would breathe the same air of my patients, who were breathing the air of a human being confronting death, confronting the real prospect death being closer than-- closer than it was farther away. So that's how I ended up at Memorial. That's the real story. And I went to Sloan Kettering to do a fellowship, just to become a good clinician. I wanted to be a clinician. I never had the expectation of being a clinical researcher or an academician. I never had the ambition or aspiration to be an academic, a teacher, an advocate; never thought to be a professor of anything. I never thought I'd write books, or scientific articles, or become president of organizations, et cetera. All that happened because of my exposure to Jimmie. And my interest in research ended up being a result of one conversation that I had as a fellow. Dr. Holland, who was supposed to be my supervisor-- she's deceased now-- she was my inpatient supervisor-- my outpatient, inpatient supervisor. So we made rounds one day, which was very rare. But we made rounds one day. And I was the liaison. I was very fortunate enough to be the liaison to the Neuro-Oncology Unit and to the Pain Service at Memorial, which were both within the Department of Neurology. When Dr. Holland was recruited to Memorial Sloan Kettering in 1977, it was by the chair of the Department of Neurology, Dr. Jerome Posner-- Jerry Posner-- who recruited both Jimmie to be the Chief of the Psychiatry Service and he recruited Kathy Foley to be the Chief of the Pain Service. So I basically held on to these two meteoroids. Jimmie Holland and Kathy Foley, those are the two people who helped-- helped pull me along the road. So on the Neuro-Oncology Unit, I had done a consult on patient with brain tumors, on high-dose steroids. And he had a severe psychosis. And I asked Dr. Holland, why is it that these patients on steroids develop these neuropsychiatric syndromes? They develop depressions. And they can get delirious, and psychotic, and manic. And this was the advice that my mentor gave me-- Dr. Holland gave me-- which turned me into a scientist. And her response was, well, gee, Bill-- in her Texas twang-- well, gee, Bill, I really don't know. I really don't know. I guess you'll just have to go figure that one out yourself. [LAUGHTER] And that's what I ended up doing. I then pursued figuring it out myself. And that's what I did for the next 30 years, trying to figure out clinical problems-- when the AIDS epidemic exploded. My first research study was to study looking at patients with epidural spinal cord compression, those who had high grade versus lower grade compression. One group got high-dose steroids, the other didn't. And I did a comparison study of psychiatric syndromes in both populations. I was at Memorial when the AIDS epidemic exploded. And so I started to do studies of delirium. I did the first double-blind randomized controlled trial of neuroleptics for the treatment of delirium in the AIDS population because they all got demented and delirious. I did the first studies of pain in HIV. I did the first studies of desire for hastened death in patients with advanced AIDS and in patients with advanced cancer. And then I started to do a lot more work in inflammation and depression in pancreatic cancer patients. And eventually, everything kind of culminated. As I evolved from being a psychiatric oncologist to a psychiatric oncologist and palliative care clinician, that kind of bridged the two worlds of psychopharmacology and palliative care. And I started really looking at issues of desire for hastened death and the loss of meaning. And then developed interventions for meaning, which we call meaning-centered psychotherapy, which has been a real advance I think in our field. DANIEL HAYES: You must have been Dr. Holland's first trainee at Memorial. WILLIAM BREITBART: Well, her story-- basically, she was this young country girl in Nevada, Texas. She grew up on a farm, a cotton farm apparently. She was most influenced by the country doctor who would visit when people were ill. And when he passed away, he gave her a set of medical books, which inspired her. And she told her family, I think I want to be a doctor. And they said, well, gee, that sounds unreasonable, Jimmie. But whatever you feel like doing, go ahead. She ended up going to Baylor. And I think she was one of only three women in medical school class at Baylor. She started her residency I think at Baylor as well. And then eventually, she got married. Her first husband died tragically. I believe it was a suicide, which I think got interested in psychiatry. She ended up, I think, doing her residency at-- finishing her residency at MGH, along with Tom Hackett, people like that. And somewhere along that route, that's where she met James Holland. So James and Jimmie were, as you say, a power couple. James told me that Jimmie was his secret weapon, his secret power. But Jimmie told me the exact same thing about James. I think they fed off each other in terms of creativity and ideas. So when James moved to Roswell Park, I guess, Jimmie started a special clinic. And she called it "special" because nobody would come to a psychiatry clinic. But they would come to a place that was special because it made them feel special. And I guess it was around that time that James started collaborators-- CALGB. On the drive to work one day, Jimmie said, you ask patients every kind of question, like how many bowel movement does he have? You're very invasive in your questions. But you never ask them how they feel. And so she insisted that James do something about that. And so in order I guess to not get nagged on the car ride every day, he started a quality of life committee in CALGB. And Jimmie chaired that for quite a while. Eventually, I think James went to Mount Sinai. And Jimmie came along. And she worked at Albert Einstein-- College Hospital-- at Boston College of Medicine. And she was there with actually a bunch of pioneers of psychosomatic medicine. There was a guy named Herb Weiner, and Sig Ackerman, and Jim Strain, and Myron Hofer. These are very important names in our field of psychosomatic medicine. Jerry Posner at Memorial, Department of Neurology, was looking to bring psychiatry into-- consultative service to Sloan Kettering. And Jimmie often says they couldn't get Ned Cassem from MGH. So they picked her in second tier. And in 1977, she came there, along with a resident who graduated from Einstein, Mary Jane Massem. And the two of them had an office, with a card table-- as she described-- and a stack of index cards with the patients on them. And they set about starting a consult service. So in '77, she was the chief of the psychiatry service. And then about '78 or '9, a clinical fellowship was established. The NIMH had an initiative at that point to develop consultation liaisons, psychosomatic medicine fellowships around the country. And so she benefited from that initiative, and started a fellowship. That continued through '78 or so. And there are a couple of classes of fellows before me. I came to do the fellowship 1984 to '86. And it was during my fellowship, I think, that Jimmie and a woman named Julia Rowland, a psychologist, who's at the Smith Center now-- but was around the NCI's survivorship program for a long time. DANIEL HAYES: I actually worked with Julia at Georgetown for five years. WILLIAM BREITBART: At Georgetown, exactly. So she and Julia wrote the first-- edited the first textbook of psycho-oncology. It was called the Handbook of Psychooncology. And that's the first time I think the term "psychooncology" was used. I think it might have been 19-- late 1980s. It might have been 1989 or so that book came out. And the term psychooncology was not hyphenated at that point. There was no hyphen between the two O's. Jimmie asked me to write about six chapters. I knew a lot about delirium. I wrote that chapter. I knew a lot about suicide and cancer, which was an early interest of mine. And I knew a lot about neuropsychiatric issues and AIDS. But I didn't know very much about neuroendocrine phenomena that caused neuropsychiatric syndromes or the psychiatric aspects of head and neck cancer. I said to Jimmie, I don't know anything about these subjects, Jimmie. Do you think I'm the person to write this chapter? And she said to me, well, Bill, there are no experts in the world in this field. [LAUGHTER] So after you write the chapter, you will be the expert. So that was the philosophy. And so as a mentor, I would basically say the greatest thing about her as a mentor was that she gave you the confidence that you could achieve whatever you wanted-- whatever you were driven to achieve. She had that faith in you. The idea was that the only person who really had to believe in what you were doing was you. And if it was important to you to find the answer to that question, that you would be able to do it. She had a knack for finding people who were very driven, who joined this mission. It was really a mission. It was a calling to provide the human side of cancer care, to provide whole person care, to take care of the person who had cancer while they were going through all the cancer treatments. And the combination therapies that James Holland had come up with. DANIEL HAYES: Two stories about Jim, who I had more association than with Jimmie. Although Jimmie told me the thing she tell you, which is you got to figure out what you want to do. And then you'll be great at it, because I wasn't sure. But with Jim Holland, two things. I was the very young guy in a field to be. And I was named chair one of the committees. And he was sitting in the back. And I was talking about, well, we need a statistical plan, and that sort of thing. And in the back of the room, as only he could do without a microphone, "Well, Hayes, if you need a statistician, it's probably not worth doing." And other is, I once asked him, between you and Dr. Frye, who was my boss, Dr. Frye White-- the three guys, who actually came up with the idea of combinational therapy? And I might as well have let a fuse to a bomb because he was-- "Well, I did. I was there before they did. They came in. They were in the minority." And he sent me the protocol. That was David. So to be sure I understood that he had written it before those guys got there. He was quite a character. And I have to say, your comments about Jimmie, and being married to Jim, were like oil and water. It's unbelievable to me that they actually had a very loving, long-term relationship. She had five children with him, who are all accomplished in their own right. WILLIAM BREITBART: Yes, they are. DANIEL HAYES: And they just they just managed to make it work because he could be hard to deal with. But everybody loved him because of it. WILLIAM BREITBART: Yeah. I think the secret ingredient there is dedication. They were both people of great dedication and commitment. And they were committed to two things. They were committed to the work they did. And they were committed to each other and their family. And so I think that was the secret-- the secret ingredient. DANIEL HAYES: There are a number of things in your own career that struck me as I was going through it. That one of my own interests would be your work with hastened death. And again, I actually wrote a little sort of term paper kind of thing on this. And it was called assisted suicide. And I think we're talking about the same thing. Talk more about that, and what you've been involved with, and where you think that's going. WILLIAM BREITBART: Right. Well, my interest in that all started during the AIDS crisis, the AIDS epidemic, in the mid-'80s to mid-'90s or so. And I was right in the thick of it, in Manhattan, in New York City. And Sloan Kettering had a large population of AIDS patients, because of their interest in Kaposi's sarcoma and lymphomas. And they ended up taking care of a lot of patients. And I saw a lot of patients. And I was that age-- I was often the age of the patients-- many of the patients who I was treating. It was very difficult work, but very inspiring work. You really felt like you were doing important work, obviously. And because of many of the patients were younger men, men in their 30s, who I could relate to in many ways-- like you, I'm sure there are many patients that you treat. There are some that you feel closer to, you identify a lot more with, right. And these were-- that was the case here. And at the time, I was treating patients with AIDS. And there was no treat-- there was no therapy at all. And people were dying very difficult deaths. And I had many, many patients who asked me if I could help them die, if I could assist them in the suicide, could I prescribe their medicine, could I somehow hasten their death? And so for me, it was a clinical problem. What do I do? How do I understand this? What drives this desire to hasten your death? I knew it came out of a sense of despair. I knew it came out of a distress and a sense of despair. But at the time that this was happening, clinically there was also a big debate in our society about legalization of assisted suicide. And, in fact, I think that was the Supreme Court case of Vacco versus Quill, which was also being adjudicated at that time. And states, like Oregon, were starting to have a referendum about whether to legalize these things. So I thought, does one create policies based on popular opinion, or whatever, or a public opinion? Or do you create policies by understanding of the problem and that's informed by research? So I thought I needed to understand this. If I was going to be helpful as a psychiatrist, in this kind of a setting. And it came up occasionally with cancer patients, too. But it was just so dramatic. And it confronted me for the first time, mainly during the AIDS crisis. I felt I needed to understand it more, so that I could know how to be helpful or useful. Was I going to be able to eliminate the suffering? Or was my only option to eliminate the sufferer? And so we set about doing a set of studies, both in terminally ill AIDS patients and terminally ill cancer patients. And I actually developed and validated a scale that measured desire for hastened death. It's called the Schedule of Attitudes towards Hastened Death. Up until that point, people didn't really have a way of measuring it. They just asked the patient, yes or no, do you have-- or they might qualify it on a 0 to 4 scale or something. And so what was really interesting-- and one of my early fellows, my first fellow, the first surgeon attending from oncology, Chasnoff, who went back to Canada-- Winnipeg. And he starts to do a study. He did studies around the same time. But he didn't have a validated measure. But we ended up finding very similar things. As it turned out, about 40%-- 45% of folks who had high desire for hastened death, had a depression. About 17% of patients that had cancer-- we'll stick to the cancer data. About 17% of cancer patients have a high desire for phase. These are patients with advanced cancer, in a palliative care unit, or a hospice, whatever. And about 45% of those patients have a depression that was undiagnosed, untreated. The other factors that seem to contribute to desire for hastened death were things like lack of social support, uncontrolled pain, and severe physical debilitation. So I said, well, we can treat pain. We can increase social support. I gave a presentation one day at-- Kathy Foley had worked with George Soros and the Open Society Institute, to develop something called Project on Death in America. And I gave a talk to the board of the Project on Death in America. I was in the class of the first faculty scholars of Project on Death in America. It included a lot of people who are at the forefront of palliative care these days. But I gave a talk on this, on patient death. And one of the ethicists in the room, a famous ethicist, asked me, well, what happens to desire for hastened death if you treat the depression? And before answering that question, I said to myself, make a mental note. That's your next ROI grant, Bill. And so what I did after that, is I wrote several grants and did two studies looking at what treating depression in patients with high desire for hastened death. And I did both in AIDS and cancer patients, terminal cancer patients, two different studies. As it turns out, if you treat-- if someone who has high desire for hastened death and they have a depression, and you treat the depression, 90% of those patients, when their depression remits, the desire for hastened death remits. But there was still this segment of population of advanced cancer patients, were not depressed, did not have uncontrolled pain, or lack of social support. There were about a 40%-- 35%, 40% of the group, I didn't have the element, the factor that contributed to this desire for hastened death. So I figured there's something there that I haven't found. So we went back and did further studies. And we looked at other variables, like anxiety, hopelessness, loss of meaning. And what we discovered was that hope of hopelessness and loss of meaning were independent and synergistic factors that contributed to the desire for hastened death, and made up an additional 30% of the so-called variance. So between depression and hopelessness, independent of depression, and loss of meaning independent of depression, you could account for about 85%, 90% of the reasons why patients wanted to desire for hastened death. Based on my research and the research of others, there's still about a 10% group who are probably not in great despair. But the issue for them is, I live my life in a pretty authentic way. I've been able to control how I live my life. I should be able to. And I want to control the circumstances of my death. And they're not impaired by depression or anything like that. But when we had the findings of hopelessness and loss of meaning, I said to myself, OK, now I've got to find an intervention for loss of meaning and hopelessness. And I was looking for a drug. I went through every page of the PDR. And there was no drug for loss of meaning or loss of hope. So I had to turn to psychotherapy. Our CL psychiatrist-- you know, psychosomatic medicine psychiatrists, we like to give drugs. If there's a drug solution, we've got it. I'm your guy. So I had to force myself to turn towards psychotherapy rather later in my career, after doing all of these stimulant trials for fatigue and things like that, and other pharmacological trials for pain-- neuropathic pain, et cetera, delirium trials. There I was, starting to figure out what kind of psychotherapy can I develop to help enhance sense of meaning and hope? And that's when I turned to, ironically, a Holocaust survivor named Victor Frankl-- and turned to the work of Victor Frank, who wrote the book, Man's Search for Meaning. His big idea was that meaning is a primary motivating force for human behavior, similar to the idea of libido, and instinctual drive, and things like that. He thought meeting was another important drive. "Better" instinctual, he called it. And he thought that there were predictable sources of meaning that one could tap into. And so we basically developed-- just sat down in a room with a couple of my fellows. And we hacked out a seven-- or at the beginning, it was group intervention. So it was an eight-session intervention. And then we developed an individual format, seven sessions. And we basically developed this brief, structured psychotherapy that involved teaching patients the importance of meaning, both didactically and experientially; teaching them the various sources of meaning; and relating it to their cancer experience and living with cancer. And the whole purpose was to be able to get through cancer, and even facing death, by sustaining a sense of meaning for as long as you possibly could. And that's what we called meaning-centered psychotherapy. I ended up doing four randomized-- NIH-funded, randomized controlled trials of both individual and a group format. And now we have a-- we're in the seventh year of an R25 training grant. We're training a national and international cohort of clinicians to provide meaningful psychotherapy in the manuals and textbooks that are published. DANIEL HAYES: I'd like to segue this-- WILLIAM BREITBART: [INAUDIBLE], I designated it as a evidence-based intervention for palliative care. DANIEL HAYES: Well, I'd like to segue, that as you were talking, most of people listening to this are probably medical oncologists. And my impression is, we don't get a lot of this training that you're talking about. And the people you're training, they're probably a psychiatrist, not a medical oncologist. How have you translated that over to our world? WILLIAM BREITBART: Now, so actually the people we're training-- a few psychiatrists, not too many. We train psychiatrists, social workers, nurses, nurse practitioners, oncology nurse practitioners, oncology nurses, oncologists, chaplains, palliative care docs. We're expanding the training. And it's quite simple. And it's actually-- but we're working with a group to develop this into a digital app. It might be able to be prescribed by oncologists so that you don't even need a therapist. DANIEL HAYES: Are you in the weeds with the medical oncologists at Memorial, at Sloan. I mean, do you make rounds with them and help train them? WILLIAM BREITBART: Yeah. Jimmie started out with one psychiatrist. By the time the Psychiatry Service became a department in 1996, I think there were 12 psychiatrists and psychologists. And as of last count, I think we have 43 faculty, 25 psychiatrists and the rest psychologists, and around 200 staff, including research staff, and research faculty, and psychiatry services. So I took over as chief when Jimmie became the first chair in the Behavioral Sciences Service. And we had a cancer disparities in the Immigrant Health Service. So it's grown quite a bit. And all of us, we work in a sort of a disease management embedded model. So I originally was the psychiatrist for the Neuropsychology and Pain Service, and moved to the hepato-pancreato-biliary disease management team. But all of my psychiatrists and psychologists are embedded in the Breast Center, and in the GI group, hepato-pancreato-biliary groups, and hepato-neck, and thoracic, and all that. So we're all interacting there. DANIEL HAYES: How do you translate that outside of Memorial in New York? I mean, most oncologists don't have access to those kinds of resources. And you've got to have thought about that. WILLIAM BREITBART: About 1996, the National Cancer Center Network, the NCCN, got established and started developing guidelines. And so they asked Jimmie to head up of their guidelines for distress. And I was part of that group, and still am. And what came out of that was screening for distress, using a distress screening tool. DANIEL HAYES: The distress thermometer-- the distress thermometer. WILLIAM BREITBART: The distress thermometer, that's exactly right. And that came out of the pain work. The pain guys had the 0 to 10 scale. We didn't want to rip them off too badly. So we didn't want to do the 0 to 10 visual analog scale. So we had to come up with a different metaphor. So we called it "pain throughout." So the Distress Screening Commission on Cancer, I think, accredits cancer centers through either the Academy of Surgery-- Surgical Oncology or something like that. They mandated that for a cancer center to get accredited, you have to have a distress screening program. And if you have a distress screening program, then you have to have people who respond to these algorithms that get developed for people who they identify with high distress. So as a result of that one move, that one move of establishing distress stress as the sixth vital sign, which was Jimmie's idea, and developing distress screening, you now have-- every designated NCI-designated cancer center has to have a psychology program of some sort. Now, a lot of them aren't as big as ours. Some of them basically involve a half-time psychiatrist, a chaplain, a psych nurse practitioner, and a couple of social workers. But every cancer center has psycho-oncology present in it now as a result of that. DANIEL HAYES: I was having dinner one time with Jim and Jimmie. And she said, you two know the blood pressure, the temperature, the weight, pulse. But you have no idea, she said, how they feel. So it wasn't the last time she asked Jim on that question. And I went, what do you mean? She goes, you need a distress thermometer. She'd already published it. Of course, I didn't know that-- and pulled it out of her purse. And so she had to show the distress thermometer. WILLIAM BREITBART: That's correct. That's correct. That's correct. One of the big problems is when Jimmie started-- and you can attest to this-- that in the beginnings of oncology, it wasn't always the case that patients were told exactly what they had. Cancer was very stigmatized. The only thing that's more stigmatized than an illness like cancer is mental health, right. God forbid, you should have a problem with depression, or coping, or panic, or something. DANIEL HAYES: It's a sign of weakness. WILLIAM BREITBART: A weakness, moral weakness. Actually, we've come a long way in terms of truth telling and being transparent. And my patients now know exactly all the genetic mutations of about the tumor and stuff like that. They know everything. And they even know how their tumor is-- mutations are evolving and changing over time. But cancer was-- the idea of needing psychosocial counseling-- psychiatric help, psychological help, it was very stigmatized. So even the word "distress" was chosen out of a concern to not stigmatize patients. DANIEL HAYES: I will tell you that when-- I was at the Dana Farber. And there was a push for the Dana Farber to develop its own hospice program. And Dr. Frye, who was physician-in-chief, absolutely drew a line, and said no way because that means we've given up on those patients. We're not going to have a hospice program at Dana Farber because we don't want patients to think they're coming here to die. And I remember thinking that some of them do. And it would be very helpful if we had a way to help them figure it out. And I have to say, in preparing for this podcast, I've read several your papers. And thought, God, I wish you'd been at the Dana Farber when I was there. Or I wish I'd been at Memorial to get to work with you. But you can see I'm kind of tying things up here. Because I could listen to you for hours,but But we only have 20 or 30 minutes. And this has been terrific. WILLIAM BREITBART: I appreciate the opportunity. DANIEL HAYES: I'm sure our listeners will say, maybe-- I wonder how we can get him to come speak to our program. But I already wrote down here, we're going to invite you to Michigan. WILLIAM BREITBART: Well, in this era of Zoom-- in this era of Zoom, I'm a very cheap date because all you have to do is just connect me by Zoom. You don't have to pay for the air fare or anything. I go everywhere. DANIEL HAYES: I want to thank you for lots of reasons. One is for filling our listeners in-- many of them are young-- about who Dr. Holland was and what she did. Because we all owe her an enormous debt of gratitude for the contributions she made-- and you personally, as well. So thank you for taking your time to speak with us. And we really appreciate it. And I hope our paths cross again in the near future. Thanks a lot. WILLIAM BREITBART: Absolutely. Thank you so much. It was my pleasure. Appreciate it. [MUSIC PLAYING] DANIEL HAYES: Until next time, thank you for listening to this JCO's Cancer Stories-- The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or a review on Apple Podcasts, or wherever you listen. While you're there, be sure to subscribe so you never miss an episode. JCO's Cancer Stories-- The Art of Oncology podcast is just one of ASCO's many podcasts. You can find all the shows at podcast.asco.org. [MUSIC PLAYING]

Dr. Hayes interviews Dr. Sarah Donaldson and her pioneering work in pediatric radiation oncology. Dr. Daniel F. Hayes is the Stuart B. Padnos Professor of Breast Cancer Research at the University of Michigan Rogel Cancer Center. Dr. Hayes' research interests are in the field of experimental therapeutics and cancer biomarkers, especially in breast cancer. He has served as chair of the SWOG Breast Cancer Translational Medicine Committee, and he was an inaugural member and chaired the American Society of Clinical Oncology (ASCO) Tumor Marker Guidelines Committee. Dr. Hayes served on the ASCO Board of Directors, and served a 3 year term as President of ASCO from 2016-2018. TRANSCRIPT SPEAKER 1: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. [MUSIC PLAYING] DANIEL HAYES: Welcome to JCO'S Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insights into the world of cancer care. You can find all of these shows, including this one, at podcast.asco.org. Today my guest on this podcast is Dr. Sarah Donaldson. Dr. Donaldson has really been instrumental in much of the development of both, in my opinion, modern radiation oncology and especially related to pediatric radiation oncology. Dr. Donaldson was raised in Portland, Oregon. She received an initial undergraduate and nursing degree at the University of Oregon in Eugene and ultimately in Portland. After a few years working as a nurse with Dr. William Fletcher, who I hope we'll get a chance to talk about later, she elected to go to medical school and spend her first two years at Dartmouth and then finished with an MD from Harvard. She was planning to do a surgery residency at the Brigham Women's in Boston but then elected to do an internal medicine internship at the University of Washington and ultimately then a residency in radiation oncology at Stanford. After a residency and a few side trips along the way, she joined the faculty at Stanford and has remained there since. Dr. Donaldson has authored nearly 300 peer-reviewed papers, probably more than that by now. That was when I last looked at her CV a couple of weeks ago, and it seems like she brings them out every week. She has served as president of the American Board of Radiology, the Radiology Society of North America, and the American Society of Therapeutic Radiation Oncology, ASCO's sister organization, of course-- ASTRO. And she also served on the board of ASCO, the board of directors, from 1994 to 1997 and, in my opinion, perhaps as importantly, on the board of directors of the ASCO Foundation for over a decade. She has way too many honors for me to lay out here, but a few that caught my eye. Named after a distinguished scientist in the past, the Marie Curie award for the American Association of Women Radiologists, the Janeway Award from the American Radiation Society, and the Henry Kaplan Award for Teaching from Stanford. And she was the inaugural recipient of the Women Who Conquer Cancer Award from our own Foundation, the Conquer Cancer Foundation. Dr. Donaldson, welcome to our program. SARAH DONALDSON: Thanks so much, Dan. It's a privilege to be talking with you today. DANIEL HAYES: I hope I got all that right. It's pretty tough to cram the distinguished career you've had into about a minute. [LAUGHS] Anyway, I'm going to start out. So I've interviewed a lot of the luminaries and the people who really started our fields or even the subfield within our field, and you yourself had quite a journey. I know you started out as a nurse. Can you just give us some background about going to nursing school and then who and what influenced your decision to become a physician? SARAH DONALDSON: Yes, I did. I can, Dan, and it's an interesting story. Because when I grew up, girls that wanted to go on to college-- and it wasn't all girls didn't go to college, but I did. The three areas that one could do in that era were become a teacher or maybe a librarian or a nurse. And so I elected to become a nurse, and I went to nursing school. And I loved nursing school. I had a terrific time in nursing school, and along the line, I met the house officers and such and ultimately got to know a surgical oncologist. That was before surgical oncology was a field, but a young man from the Boston City Hospital training program, which was a very good surgical training program at the time, who was recruited to the University of Oregon to start a cancer program. His name was Bill Fletcher-- William S. Fletcher. And when I graduated from nursing school, Bill Fletcher was looking for a right arm assistant. He was looking for somebody to help him develop a cancer program. And he offered me a job, and the job was to work with him in the operating room, either scrubbing or circulating, to run his tumor board-- and that meant just scheduling it and taking notes and such-- and working with him in his tumor clinic. And in the tumor clinic, he was at that time beginning clinical trials, and Oregon was part of something that was called the Western Cancer Chemotherapy Group, which ultimately merged with SWOG. But at that time, his helper-- me-- filled out the forms, and we sent them to patients that were entered onto the study and got consents and measured lesions and that sort of thing. And I worked hand in hand with him. In addition to working with him in those clinical parameters, he gave me a little laboratory project, and so I worked with him in the lab and learned a little bit about small animal oncologic research, et cetera. And after a couple of years working with him, he suggested that I would be a better employee if I took some additional courses, and he suggested that maybe I should take physics because at that time he was doing isolation perfusion. I was running his pump oxygenator. He asked me what I would do if there was a pump failure. I didn't know. And he said, well, I think it would be good if you took physics. Well, the prerequisite to physics was organic. I hadn't had organic, and he was also working with radioisotopes in the lab. And he said, you could really be more helpful to me if you could work in the lab. That meant I had to take organic, and the prerequisite to organic was inorganic. To make a long story short, I took these series of classes in night school while I was working for Dr. Fletcher in the daytime. And then one night, I was working on my hamster project, and he said, I think you should go to medical school. I said, I can't go to medical school. And the long and the short of it was Dr. Fletcher thought I should go to medical school, and he made that possible for me. It's a very, very interesting story, but what it means is that I was mentored by somebody who was a visionary, and he could see a lot more than I could see. And he got me excited about medical school and everything that I knew about medical school is what he had taught me, so I of course wanted to be a cancer surgeon. And then after I went to medical school and I went to the same medical school he did, I just followed his advice. Every time I needed some guidance along the way, I asked Dr. Fletcher what I should do, and he told me what I should do, and I applied. And that's what I did. And so when I came time to choosing a specialty, I decided I would train in surgery, and I applied at the Brigham and was accepted into their surgical program. It was run by Francis Moore at the time. And that was a big deal because they hadn't had women in their surgical field, and I was very excited about all of that but feeling totally inadequate because I didn't think I knew enough medicine. And so I went to Dr. Moore and said, I think I'd be a better house officer if I knew some medicine. He says, OK, well, go take a medical internship, and we'll hold you a spot. So I went to the University of Washington and took general medicine, which was a very vibrant program, a really exciting program, and I just came alive in my internship. I loved everything about it. And then I decided I wanted to be an internist. So at this point, I was offered a position in Washington, and I had already accepted Dr. Moore in Boston. And I didn't know what to do, and I asked Dr. Fletcher what I should do. And he said, Sarah, the world of-- he called it radiotherapy at the time, but what we would call radiation oncology-- needs more surgically oriented physicians. I think you should go down and talk to my friends at Stanford. So I came down to Stanford. I met Henry Kaplan and Malcolm Bagshaw and the leaderships in the department, and including Saul Rosenberg, who was one of the people who interviewed me, and I left that day visiting at Stanford making a commitment that I would come to Stanford as a radiation oncologist. So I wanted to do everything, and I met some very inspiring people along the way, perhaps like you have in your own career. And it's for that reason that I am now excited about mentoring because it's a little bit of payback because somebody opened the door for me and made it possible for me to have a most gratifying professional career, and I would like to do that for as many people as I could. DANIEL HAYES: I love that story. And there were two things about it that came out. One is I normally don't like people who namedrop, but when you can namedrop the names you just dropped-- Bill Fletcher, who I consider really one of the early surgical oncologists, Henry Kaplan, Saul Rosenberg, Franny Moore. I was in Boston of 15 years, and he was a legend. He was not the chair anymore by any means. In fact, he passed away. But it was legendary. You should be doing these interviews instead of me. [LAUGHS] You've been there. SARAH DONALDSON: Well, it's all about where you are at the time you are and meeting the right people. I think so much of my gratifying career is just because I happened to be at the right place at the right time and met the right people. DANIEL HAYES: Well, the other thing I want to say is I always believed I don't trust people I interview who say they know exactly what they want to do. And the reason I say it that way is I have a young woman who's been a technician in my lab that just got into med school, and she sat with me and said, now, when I go there, should I tell them I know exactly what I want to do? Because she's interested in the oncology. Or should I go through my rotations and see what I like? And I said, I forbid you from going there knowing what you want to do. Go to your rotation. See what you like. You're going to run into somebody who just inspires you beyond words who-- I don't know-- maybe selling shoes. But whatever it is, become like her, and you'll be extraordinarily successful. So if there are young people listening to this, I think that your story, Dr. Donaldson, is a classic for that, the way you kicked around. And actually, you didn't tell us, but I'm going to have you tell us about your trip to Paris and that experience too and how that influenced you. SARAH DONALDSON: Oh, that was another wonderful opportunity. When I finished my training, it was 1972, and that's when America was in the Vietnam War. All of my classmates were being recruited to a mandatory draft and were having to go to Vietnam, and I felt like I too should be just like all of my best friends and I too should join the military and go to Vietnam. But that wasn't possible. Women couldn't do that. So I looked for things that I could do where I could do something useful, and I thought about joining the ship Hope and all sorts of fanciful things, but basically I was lost, and I didn't know what I wanted to do. And at that time, there wasn't a carve-out of pediatric oncology as a specialty. It hadn't been defined, but there were people that were doing pediatrics. And as a resident, I had had a little rotation at the M.D. Anderson, and when I was in medical school, I had spent a fair amount of time at the Boston Children's, so I kind of knew a little bit about those institutions. But the thing was at Stanford, I knew that I wanted to be at Stanford. But Stanford didn't have a cancer program either. And so again, I went to Henry Kaplan and Malcolm Bagshaw-- at that point, Kaplan was head of the department, and Malcolm was his associate director. But they changed positions about a year after that. So I trained under both of them, really, but I went to Dr. Kaplan and said, I'm interested in pediatrics. And I said that because we didn't have a program at Stanford and that was like a carve out that nobody had addressed yet. And he said, oh, well, if you want to study pediatric cancer, you have to go to the Institute Gustavo Roussy and train under Odile Schweisguth. And I said, no, I don't speak French. I can't do that. I'd like to go to London because I like the theater. And he said, no, no, no, no, no, that's not the way it is. If you want to be a pediatric doctor, you have to go learn pediatrics and learn to think like a pediatrician, and that means you have to go and train under Odile Schweisguth. She was at the Grand Dame of pediatric oncology. She took care of all the children in Western Europe. And so I went to Institute Gustavo Roussy to be a fellow in pediatric oncology, although I did spend some time on the radiotherapy unit as well. But that's where I learned pediatric cancer because I learned from Odile. And in French, there's a formal and an informal, and I never understood the formal because when you talk to kids, you talk in the familiar form. So I was just talking to and not [SPEAKING FRENCH]. I would just say, [SPEAKING FRENCH] and such. [INAUDIBLE] French. And that's how I learned French. More importantly, I learned the biology of cancer from Odile. It was largely observational. And I learned a lot of late effects of children who were cancer survivors. So when I came back to Stanford, at that time Mal Bagshaw was chair, and he said, well, why don't you work on starting a cancer program? We'd like to have a cancer program. So I worked with the pediatric cancer doctor at Stanford. His name was Dan Wilber, and he had just come from the M.D. Anderson. And the two of us started a cancer program at Stanford. And so I've been kind of doing that ever since, of doing pediatric cancer. So I would say my skill set came along just because the right people told me where to go at the right time. DANIEL HAYES: Were the pediatricians welcoming, or did they resent the fact that you'd never been a pediatrician? SARAH DONALDSON: Malcolm Bagshaw gave me the clue to that by saying the only way the pediatricians will accept you is by having them accept you is one of their own. So you have to learn to think like a pediatrician, and then they will accept you onto their team as one of theirs because pediatric doctors are very possessive about their patients, and pediatric cancer doctors are possessive about their patients. So it worked for me. But it worked because I had had this special training under Odile Schweisguth, who was a general pediatrician, and so I was accepted because I was at that point thinking like Odile thought because that's what she taught me how to do. So I always felt like I was accepted by the pediatric cancer doctors who then became the pediatric oncologists because that field didn't really open up for a couple of years later. DANIEL HAYES: For our listeners, Dr. Donaldson and I have not met before, and I certainly have never worked with her. But she's talking, she's glossed over that when you work with the French, you really have to speak French. When you work with the pediatricians, you really have to speak pediatrician. And you've managed to do both of those. I don't know anybody who's been that successful. I should take a sabbatical and come work with you. [LAUGHS] SARAH DONALDSON: Well, I'll tell you, Dan, there was one wonderful thing that happened because shortly after I was working at Stanford doing pediatrics, our dean wanted to recruit some more people and buff up our pediatric cancer unit. And he recruited Michael Link, who had just come out of his training at the Dana Farber. And so Michael and I started working together his first day as an assistant professor at Stanford, and pediatric oncology is a team sport. Pediatric radiation oncology is a team sport. And I had a wonderful teammate, Michael Link, with whom I worked very well, and we became very fast friends. And we did pediatric lymphoma and sarcoma, bone sarcoma, and soft tissue sarcoma, and all sorts of stuff. And I had a wonderful, wonderful colleague working with Michael Link. So one of the keys to my most gratifying part of my career at Stanford has been working with Michael Link and his associates. DANIEL HAYES: As an aside, by the way, Michael and I overlapped just a little bit at Harvard, but then he proceeded me as president of ASCO by two years, and we got to be pretty close friends during that period of time. And I echo your fondness for him. He's just an amazing human being, as far as I was concerned. And he's one of the-- he may be-- I'm trying to think, has there other pediatricians that have been president of ASCO? I'm not-- SARAH DONALDSON: No, he was the first. Yeah, he's the only one to date. DANIEL HAYES: Yeah. And he left a big stamp on the society in terms of-- we always had some pediatrics involved-- you, especially-- during the years, but as president, he was able to leave a big footprint of what we do. So he was terrific. I'd also like you to talk a little bit about the early days of the co-operative groups. You threw out that you were in the Western Group that became part of SWOG, and what were the hurdles and obstacles to getting all these folks to work together? And what do you see the pros and cons of the cooperative groups in the country? SARAH DONALDSON: I know the cooperative groups mainly through the lens of the pediatric cooperative groups. I mean, I can tell you about the adult ones, but I really know the pediatric ones. And at the beginning, there was one, and then there were two. And we worked competitively, and then ultimately the pediatric doctors learned early on that the children they took care of had rare tumors, and no one physician had a whole lot of experience with any cancer. For example, this tells the story well. When Hal Maurer was chairman of Pediatrics at Virginia, he had a child with rhabdomyosarcoma. And he called his friend Ruth Hein, who was at Michigan, and said, Ruth, I've got this child with rhabdomyosarcoma. Have you ever treated a child like this? And Ruth said, oh, I had one patient, but I think you should call Teresa because Teresa, I think, had a patient. And so Teresa Vietti was at Washington University, and so Hal Maurer and Teresa Vietti and Ruth Hein and a few other really, really pioneers started to throw their lot together and decided that the way they could answer a question about these rare tumors is by deciding what was the question of the day and working collaboratively. And then Hal Maurer became the first chair of what was then called the Innergroup Rhabdomyosarcoma Study, which has now been merged into the other pediatric groups. But that same process that worked for rhabdomyosarcoma was then employed for Wilms tumor, and then subsequently down the line, brain tumors and all the other solid tumors. And of course, St. Jude was doing this with their leukemia studies and Dan Finkel, and then Joe Simone did it with leukemia. They got everybody to join in on their team, decide together around the table by consensus what is the question that we want to have an answer for, and then just treat all the patients in a consecutive fashion, analyze those, and then take that step and go on and build to the next step. That's how the pediatricians have done it because their cancers are so rare that one person doesn't have very much experience. They have to throw their lot together and work collaboratively. So they don't work competitively. They work collaboratively. DANIEL HAYES: This is very similar to the stories I of course heard from Drs. Frei and Holland that they came ultimately to CALGB to be after a couple of mis-starts. But it's one of the things I worry about COVID. It's not the same Zooming with somebody or talking on the phone as it is sitting around dinner and just saying, maybe we could do this and make it work. So I'm hoping young people are listening to this and saying, OK, maybe we can start something new that a bunch of us work together and get things done. That's a really great story. You were early on and ended up taking both diagnostic and therapeutic radiology boards, correct? When they were combined? SARAH DONALDSON: No, no I didn't. Radiology was combined at that time, but Stanford was one of the few institutions that had a carve-out for radiation oncology without diagnostic training, and I wasn't in the first class. I was in the fourth or fifth class, so my formal training was only in what was called radiation therapy, now called radiation oncology. So it was one department, and I worked collaboratively with a diagnostic radiologist because I knew nothing about image interpretation-- nothing at all. So I'd see an X-ray. I didn't know how to interpret it, and I'd have to go and ask for some help. But they were like our best friends. But the diagnostic people could take the picture, but the therapists had access to the patients. So that made all the difference in the world because we really had access to the material, the clinical material or the blood or the bone marrow or the biopsy specimens or whatever it was, and allowed us to do studies. But to clarify, no, I was not. I do not have formal training in diagnostic radiology, although I have worked with them so closely now that I feel like they're all my brothers because you cannot do radiation oncology without collaborating closely with the imagers. DANIEL HAYES: And my first interview was with Sam Helman. This has been three or four years ago. And he was still lamenting the split because he thought it was to learn both-- and for the reasons you just said. If you don't know where it is to shoot your bean, you can't shoot your bean. That's not exactly what he said but something like that. On our side, they team hematology and oncology. Like you, I never got trained in hematology. I only trained in solid tumor oncology, which has not hurt me in any way. In fact, in many respects, I focus my efforts on things I seem to know about and let somebody else worry about blood clotting. Of all the things you're well known for-- and again, it was hard for me to get it all into a minute or two, but probably teaching and mentoring. And in this conversation, I see why. Tell me how you think that's evolved in your field, especially in radiation oncology, teaching and mentoring, and the importance of the things you've done-- and perhaps some of the people you have trained yourself and you're proud of. SARAH DONALDSON: Well, when I think of all the things that I love about my professional career, I love taking care of patients. And I've had very joyous experiences of watching pediatric cancer patients grow up and watching them in their process and treating them when they're toddlers and then getting invitations to graduations and wedding invitations and baby announcements and following through that. That's very, very gratifying. But the single most important and most gratifying part of what I do is the volumetric feedback and gratification from training residents because one patient is one patient, but one trainee then goes into academic medicine and that person has 30 or 300 or 3,000 trainees. And you see your impact is just explosive. And Stanford has had a training program in radiation oncology from the very, very beginning. It was one of the first programs that did train in radiation oncology, so a lot of talented people have come through Stanford. They need to have what Bill Fletcher did for me, which was open doors and help them with networking and giving them an opportunity and giving them some guidance and being their new best friend. When your trainees trust you like that, then you can really, really have a relationship, and you can really help them. And so I am very, very, very proud of our trainees that are now all over the place as cancer center directors or directors of departments or divisions that are doing what they're doing. You just meet the best of the best. That is the most gratifying part of-- maybe it's because that's what I'm doing now, but it's the most gratifying part of medicine that I've experienced. DANIEL HAYES: This is the third time I've said this on this call-- I hope there are young people listening, and I hope they're looking for a mentor and they can find someone as generous and trusting and helpful as you have been. SARAH DONALDSON: Dan, let me just say one little thing. DANIEL HAYES: Yeah. SARAH DONALDSON: It was extremely helpful to me-- and wonderful recognition for ASCO-- to provide the opportunity that I received the Women Who Conquer Cancer Mentoring Award. Because when I won that award, I was the inaugural-- but when I won that, all of a sudden people thought that I knew something about mentoring. I'm not certain I did know anything about mentoring, but I was asked to talk about it and asked to give advice, et cetera. And it gave me a carve out that was quite novel at the time, and now, of course, it's a mandated requirement in every training program, et cetera, but it wasn't then. And for me, it was just to return what Bill Fletcher did for me. The only way I can say is that it's a pay out, and it's so gratifying. It just makes you happy to get out of bed every morning and interact with the people you do interact with. DANIEL HAYES: He was pretty young when he began to mentor you. And I think having seen and been mentored and mentored other people, I always worry about a young person trying to mentor because you've got your own career to worry about, and it's hard not to be selfish when you're building a career in academics. He must have been a remarkable-- is he still active? Is he still around? He must have been a remarkable guy. SARAH DONALDSON: He was a remarkable guy, and no, he passed away. But that was true. And that is true because junior faculty are busy making their own professional career, and they don't have time. They're busy on their own path, and it's a hard path to go on. So most junior faculty don't really have very much time to do formal mentoring. But in Bill Fletcher's case, we worked hand in hand as sort of partners. And so I think, in some ways, I was helpful to him because I could do literature searches for him. I could write the first draft of his paper. I could write the first draft of his grant. I filled out the forms. I did a lot of things that were labor saving for him, but for me, what was he doing for me? He was teaching me to suture. He was teaching me how to resect normal [INAUDIBLE]. He was teaching me lymph node drainage from cancers. He was teaching me about drug metabolism, methotrexate, and phenylalanine mustard. And 5-FU was an experimental agent. So was vincristine-- those kinds of things. So I learned a lot from him just in the ordinary practice of taking care of the patients. DANIEL HAYES: By the way, two stories I read about you-- one is how you met Henry Kaplan, and the second is the first paper you wrote with him. Can you give us those two? And then I think we've got to sign off. SARAH DONALDSON: Well, let me tell you about the first paper I wrote with him because the other one is too funny. Everybody will laugh at me. The first paper I wrote with Henry Kaplan, I worked really, really hard on it. It had to do with bacterial infections in patients with Hodgkin's disease because we were doing splenectomies on everybody, and they were getting pneumococcal bacteremias and meningitis. And I was running the ward at that time. I was taking care of a lot of patients that were sick. So I was writing up this experience. And I wrote what I thought was the perfect paper because, see, Kaplan had a high bar, and you didn't want to disappoint him. So I wrote the paper that I thought was perfection. I had gone through a lot of drafts. And I gave it to him, and he returned it to me the next day. He read it that night. But I only looked at the first page because the first page looked like a blood bath. Everything he wrote, he wrote with a red pen. And there was red writing all over the first page. I couldn't see any white paper. It was all red comments. DANIEL HAYES: [LAUGHS] SARAH DONALDSON: And I went through-- I don't know-- 24 different drafts of that paper finally being published. And so one of the things I try to do with residents now is to teach them, you have to have a hypothesis. You have to make certain you have a database. You have to have a long term follow up. You have to understand statistics, and you have to write a paper knowing what you're doing. You don't just start writing. You do a section and a section and you build it with evidence. So I enjoy doing editing, and I think I can help some trainees focus their thinking in terms of writing a grant proposal or a manuscript that's worthwhile publishing. My introduction to Henry Kaplan-- there are many, many funny stories about them, but to end them all, I will have to say that he was very, very, very good to me. He provided a lot of opportunities and was a huge role model. He taught by scarification. We were all scared to death of him, but he was absolutely a wonderful, wonderful huggable person, if you felt like you could hug him. We didn't do that very often. We might have hugged Saul Rosenberg, but we didn't hug Henry Kaplan. But they were both helpful to me, especially in understanding lymphomas. DANIEL HAYES: For those of you listening who don't know who Henry Kaplan was, I think it's fair to say he was one of the first people to prove you could cure Hodgkin's disease with radiation. Do you agree? Is that a fair statement? SARAH DONALDSON: Yes, that's where his name came. But of course, what Kaplan did was he recruited Saul Rosenberg, and the two of those worked hand in hand, and they brought to Stanford what we call the Lymphoma Staging Conference, which was a combined modality conference where we talked together over each patient. And together, they wrote clinical trials that were institution-based clinical trials. So what Kaplan did was he did a lot of technical work with the linear accelerator, but that was just a tool. My way of thinking is his most important contribution was the importance of combined modality therapy and understanding what your colleagues can contribute and what you can contribute in doing it as a team. DANIEL HAYES: And I will encourage anyone who's listening to this to go back to the website and listen to my interview with Dr. Rosenberg who laid that out in spades. And the first few patients he treated, he had a chair outside his exam room. He would examine the patient, take them out, put them in the chair, start the IV himself, go mix the chemotherapy, hang it up, and then see the next patient in the room while the first patient was getting chemotherapy. It's a little different now. [LAUGHS] Anyway, thank you so much. By the way, I have a copy of Dr. Kaplan's book on Hodgkin's disease, which was the Bible when we were training. You can't see it because it's on my bookshelf behind my camera, but I still open it up quite a while, even for a breast cancer guy. It was a classic. I also want to say, it's very clear to me you're a nurse at heart. You've been a fabulous physician and researcher and mentor, but your love for people shines through, so congratulations. I think that's terrific. SARAH DONALDSON: Thank you so much. DANIEL HAYES: Thanks for taking your time to speak with me today. I'm sure people are going to be thrilled to listen to this, and thanks for all you've done to feel. It's just really remarkable-- and what you've done for ASCO and the Foundation, which is a big, big, payback. Thanks for everything. SARAH DONALDSON: Thank you. DANIEL HAYES: Until next time, thank you for listening to this JCO's Cancer Stories: The Art of Oncology Podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple Podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode. JCO's Cancer Stories: The Art of Oncology Podcast is just one of ASCO's many podcasts. You can find all the shows at podcast.asco.org. [MUSIC PLAYING]

Dr. Hayes interviews Dr. Pamela Goodwin on her work in metabolism and cancer. Dr. Daniel F. Hayes is the Stuart B. Padnos Professor of Breast Cancer Research at the University of Michigan Rogel Cancer Center. Dr. Hayes' research interests are in the field of experimental therapeutics and cancer biomarkers, especially in breast cancer. He has served as chair of the SWOG Breast Cancer Translational Medicine Committee, and he was an inaugural member and chaired the American Society of Clinical Oncology (ASCO) Tumor Marker Guidelines Committee. Dr. Hayes served on the ASCO Board of Directors, and served a 3 year term as President of ASCO from 2016-2018. TRANSCRIPT SPEAKER 1: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement [MUSIC PLAYING] SPEAKER 2: Welcome to JCO's Cancer Stories, The Art of Oncology brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of this shows, including this one, podcast.asco.org. Today my guest on this podcast is Pam Goodwin. Dr. Goodwin was instrumental in the consideration of metabolism, exercise, and diet for prevention and/or treatment of breast, and for that matter, other cancers. Dr. Goodwin received her undergraduate medical degree from the University of Ottawa, and then she did a residency in internal medicine at the University of Toronto, where she also did a year residency in pathology, which I was unaware of. She went on to train in oncology at Princess Margaret Hospital in Toronto, and she spent a year as a research fellow with, in my opinion, the legendary Dr. Norman Boyd. She's on a clinical appointment at Mount Sinai Hospital in Toronto, where she directed the breast program for 15 years. And she's remained on faculty for the University of Toronto since 1986, where she is now the Marvelle Koffler Chair in breast research and a professor in the departments of medicine and clinical epidemiology. She's won many, many awards for her contributions to science, but perhaps most germane to this discussion-- and I was unaware-- she was named a star in nutrition and cancer by the United States National Cancer Institute a few years ago. She's authored over 200 peer reviewed papers. And she serves as the current editor in chief of the Journal of the National Cancer Institute Cancer Spectrum, and she's also deputy director of JNCI. By the way, she receives research funding in collaborations with Epic Science but has no other declarations of conflicts. Dr. Goodwin, welcome to our program today. PAM GOODWIN: Thank you. It's a pleasure to be here. SPEAKER 2: So let's start with a [INAUDIBLE] question that I ask almost everybody in this series. And that is, tell us a little about yourself and why oncology. Was there a light bulb that went on, or you knew you were going to be an oncologists from the time you were in kindergarten? PAM GOODWIN: Well, I was born in Ottawa. And when I was a young girl at five years old, we moved into the country. And it was just outside of Ottawa, but it's now called Kanata. But at the time, it was a very rural area. And I started my education in a one-room schoolhouse. By the time I was halfway through my schooling, they put a division down the middle of the room and it became a two-room schoolhouse. But from the very beginning, I remember in grade 1 sitting at the back of my row-- each grade had a row-- and I would listen to the lesson from my row. And the teacher would move to the next row, and I would listen to that lesson, and then I would listen to the next lesson. I always wanted to learn more. I became interested in oncology for a reason that many oncologists have. My mother had cancer and died when I was still in school. And-- jeez, still emotional. And it really made me realize that-- at the time, cancer was almost uniformly fatal. It made me realize that there was a lot of work to be done in the area of cancer. So I very early on decided that I was going to do medicine and that I was going to do oncology, and I never looked back. SPEAKER 2: So neither of your parents was a physician? PAM GOODWIN: No, no. My mother actually worked in the finance department on Parliament Hill for the government of Canada. And my father, in the 1950s, worked on computers for the Department of National Defense. So no medical people there at all. SPEAKER 2: Well, at least it sounds like there was some science behind you. And when you went into oncology then, were you just dedicated to breast cancer because of the history you just gave us, or was there somebody who talked you into being a breast cancer person? PAM GOODWIN: I think Norman Boyd had one of the biggest influences me. My mother didn't have breast cancer, she had myeloma. But Norman, at the time, was at Princess Margaret Hospital and was very interested in diet and breast cancer risk. And I was very interested in the role of the patient in cancer from the very beginning. I thought I might end up doing research in quality of life, because that was an emerging field at the time. But I became very interested in the host factors in obesity, metabolism. And I chose to focus on how these factors impacted the clinical course of cancer for the most part, and I focused on breast cancer. At the time, it was way, way out there to work in this area. And one of my biggest challenges as a new investigator and a new staff person was to be sure that people didn't think I was a little bit of a quack by working in this area. SPEAKER 2: Actually, I have two follow up questions for that, and I'll get to that in just a moment. But can you tell us a little more about Dr. Boyd. I mentioned him earlier as being legendary, but a lot of our listeners may not know who he is and what he's done. PAM GOODWIN: So Norman Boyd was a medical oncologist at Princess Margaret Hospital who became a clinician scientist over the years. He was very interested in the role of dietary fat in breast cancer and actually conducted a randomized trial of dietary fat reduction, which, unfortunately, didn't show a beneficial effect on breast cancer. But he was one of the grandfathers of the mammographic density breast cancer risk association. And he did a very large amount of work confirming that association, quantifying that association, and identifying how it made independent contributions to breast cancer risk over and above family history, for example. SPEAKER 2: I want to say, I have-- obviously, I think you can tell-- enormous respect for Dr. Boyd. He's truly a giant. However, he's caused more trouble in the United States than he knows, because every woman has a mammogram. If she has dense breasts, she gets a little piece of paper saying, speak to your doctor about this. And then we say, I don't know what to do about that. PAM GOODWIN: That's right. That's right. That happens in Canada sometimes too. SPEAKER 2: So you've talked about Dr. Boyd being a stimulus. And you sort of hinted on this. Were there obstacles? I can imagine mentors at the time at Princess Margaret or other places saying, are you crazy? This will go nowhere. You're wasting your career. PAM GOODWIN: Well, I think a lot of people thought that it was a little bit crazy. I think a lot of people thought that it was possibly these people were being under dosed with chemotherapy, that the obesity cancer link wasn't a true biologic association. And that's one of the reasons that I have practiced at a general hospital my whole life. At a general hospital, we have a very strong diabetes and endocrinology department. And they fully understood that these factors could be important. They had seen the impact of diabetes on a host of organs-- end organ disease in the kidney, for example-- and they were very open to this type of research. And I was actually recruited to Mount Sinai Hospital by a guy called Lou Siminovitch, who was a molecular biologist. He had just set up a new research institute at Mount Sinai Hospital. And even though he was not an MD, he wasn't a clinician, he would look at all of my grants and ask the most important question, find the fatal flaw that needed to be fixed before it went in. And Lou continued to support me throughout my career. He died just a couple of weeks ago just shy of his 101st birthday. SPEAKER 2: Oh my. That's great. So you mentioned your grants. Was it hard to get funded early on when you started this? PAM GOODWIN: With some organizations, yes it was. But I think because I always presented this as a biologic association and my focus, at least early on, was to try to identify what was the biologic link between obesity and breast cancer, I think my grants were somewhat better received. I think I always had hypotheses relating to the biomarkers and not just to the prognostic association. Now it wasn't always easy, because my first study was a prospective study of obesity and breast cancer. And towards the middle of the 1990s, we confirmed the association and we looked at biomarkers. We collected fasting blood during the study. We looked at biomarkers focusing on insulin, because there was some emerging evidence that insulin might be associated with cancer. And we actually showed that insulin was strongly associated with obesity and was a stronger predictor of breast cancer recurrence and death than obesity. So as a young staff person-- I think I was an associate professor at the time-- I wrote that up and I sent it to The New England Journal of Medicine, thinking that I really had a great finding there. And New England gave me three reviews. Two of them were glowing. They were fantastic, really nothing to change. And the third one said, I see nothing wrong with this paper, I simply don't believe the results. And New England rejected it. SPEAKER 2: It's always the third reviewer. PAM GOODWIN: That's right. But it took another three years to get it published in JCO. And it's now my most highly cited paper, so go figure. SPEAKER 2: That's interesting. So you talked a bit about the biology. Again for our listeners, my impression is not just that obese people get cancer, but that there is an underlying biology that connects them. Can you go through what your work to show that, and others for that matter. PAM GOODWIN: Yeah, so it's a really complicated association. And the biology of obesity is complicated. There is an alteration or a change in adipose tissue in individuals that are obese, and that's associated with a change in physiology. And both of those factors can then impact the development and prognosis or clinical course of breast cancer. We focused more on the physiology. We've looked at insulin, which I think is now accepted as a growth factor in breast cancer. Most breast cancers express insulin receptors on their surface and insulin that is circulating signals with those receptors to turn on the PI3 kinase pathway. Hyperglycemia, which is associated with obesity, may also change cellular metabolism. And there's a lot of people that have been focusing on inflammation in the adipose tissue. Andy Dannenberg's group in New York has probably been the main people in this area. We've recently looked at that, and we've actually found-- Martin Chang, a pathologist who worked with me at Sinai, and he's now in Vermont, he recently found that the type cellular response to obesity that occurs in adipose tissue may actually determine the physiologic response to obesity and whether obesity impacts breast cancer outcomes. So in other words, if there are CD68 positive macrophages in adipose tissue, you're going to have insulin resistance and you're going to have poor breast cancer outcomes. But for another woman who has the same BMI, if she has an absence of those CD68 positive macrophages in the adipose tissue, she will not have insulin resistance and she will not have worse breast cancer outcomes. So we're trying to focus there on what is the link between the adipose tissue response and the physiologic response and what drives that. SPEAKER 2: I think almost everybody listening to this podcast knows that over the last 15 or 20 years, we've really broken breast cancer into a number of different kinds of cancers. In fact, I really believe that they all happen to be different cancers that happen to start in one anatomic site-- the breast-- as opposed to being all breast cancers. Have you seen differences in the emergence or potential treatment of different subtypes related to obesity or obesity management? PAM GOODWIN: So in some of our earlier work, we actually found that obesity was "perhaps" a little bit more prognostically important in ER negative breast cancer. And I put the word perhaps in quotation marks there. I think more recent work has not shown that, and that obesity contributes across the spectrum of breast cancer. To the extent that obesity impacts are related to estrogen, then you're going to see a greater impact in hormone receptor positive breast cancer. But the association is really seen across the spectrum of breast cancers. SPEAKER 2: So another question that raises-- and others have addressed this-- do you think it's obesity or specific types of diets that are the culprit? PAM GOODWIN: I think it's obesity. I think diet contributes to body size, and I think the composition of the diet may play a role in the response to obesity. But I think that if you are normal weight and have non-obese physiology, the dietary composition doesn't matter quite as much. I think right now when people are looking at diet, they're no longer looking at the fat content of the diet. They're looking at whether it's a healthy diet, whether there are legumes and nuts and healthy oils, but they're also looking at the glycemic index of the diet. I think all of that contributes, but my read is that obesity is the primary driver of this association. SPEAKER 2: And do you think that once you have obesity, it's too late, losing doesn't help. In other words, this is something that's imprinted early on, because I do want to get into treatment too, but especially for prevention. PAM GOODWIN: So that's an unknown. Steve Hursting's group has actually done an experiment where they had mice that were either fed a normal diet and weren't obese, or were fed an obesogenic diet and became obese. And the ones that became obese, a group of them, half of them were put back on the normal diet and they became non-obese. And then they injected all three groups with cancer cells. And what they found was that the currently obese and the formerly obese mice had tumor growth that was the same and was much greater than the mice that were never obese. And they also found patterns of DNA methylation and gene expression in the mammary fat pad that was similar in the formerly obese and the currently obese mice and different from the never obese mice. That suggests that, perhaps, there may be some carryover after weight loss. But I think we need to be very, very careful. The tumor cells were injected almost immediately after the weight loss. And these were mice, they weren't people. People, I think, are a little bit more complex than mice. SPEAKER 2: I mean, this raises-- actually, I have to say that this entire series for me has been, what if I was in a cab with these people who have been experts and pioneers in a field and I can just ask ask them any questions I want to. These are questions I've been wanting to ask you for 20 years, but we never had the opportunity. So the other thing is it's a little bit like early pregnancy. We know there is something about early pregnancy that imprints a cancer reduction compared to late pregnancy. And as you know the Russos have worked on this for years and years. And I've wondered if that's the case with obesity, but now I'm going to [INAUDIBLE] myself instead of you. It's just something I've thought about for a long time. PAM GOODWIN: We're not going to know until we get the results of some studies. The BWEL study led by Jennifer Ligibel looks at weight loss after breast cancer diagnosis. It's fully accrued. It's a randomized trial. It will give us some definitive information. But our group did a small randomized trial called the LISA study, which were reported out about a year ago. And in that study, we actually showed that there was a reduced risk of breast cancer recurrence in women that were randomized to the dietary-- the weight loss intervention arm. The hazard ratio was 0.71. We'd hypothesized a hazard ratio of 0.76. So it looked good, but we did not complete accrual on that study. So we didn't have the power to conclude that the effect that we saw was actually significant. But I actually think that those results are-- I think they're going to lead us in the direction that we hope to see in the BWEL study. In other words, I think that the effect of obesity will not be fully baked in and that there may be some ability to reverse it. We know that losing even 10% of weight will reduce insulin, for example, by 20% to 30%. We know we can see major changes in physiology when we see weight loss. SPEAKER 2: So in your work with [INAUDIBLE], so go back to biology, and you had an opportunity then to look at things like methylation patterns before and after weight loss in cancer cells, or what's getting turned on. You talked about the CILs in macrophage infiltration, but are there things going on in the cancer cells themselves-- or the normal cells for that matter-- that make them more or less susceptible to going on to become nasty cancers? PAM GOODWIN: So that's a little bit beyond my focus. In the BWEL study, blood is being collected repeatedly. So we'll at least be able to look at those changes in lymphocytes, for example. When you're looking at the adjuvant setting, there's no tumor to rebiopsy. And I'm not convinced that the obesity link is the same in the metastatic setting as it is in the adjuvant setting. Once you get into the metastatic setting, the presence of tumor itself may alter metabolism and may impact a lot of the factors that we're looking look at. SPEAKER 2: I'd like to ask you to look forward a little bit now too, because especially in your early work with epidemiology and a focus on lifestyle changes and weight loss, do you think that's going to be where the magic bone will be, or will it be a drug that people can take? I know you've worked quite closely with the Metformin. And imagine you looked in a crystal ball here, I know it's cloudy, but maybe you can give us some insight. PAM GOODWIN: Well, we've looked at Metformin initially because it was an insulin lowering drug. And then Grahame Hardie identified the AMP kinase mechanism of action, and now there's a host of direct antitumor effects that have been reported with Metformin. I think that Metformin in many ways is an anti-obesity physiology drug. It improves much of the physiology associated with obesity. As you know, we've done work showing that it lowers insulin in non-diabetic patients who have breast cancer. We've also done a neoadjuvant window of opportunity study, where patients were given Metformin for the two weeks between diagnosis and definitive surgery. And we showed that Metformin actually lowered T67 and increased apoptosis in the cancer cell. So that was the time when we could look at the cancer cells before and after drug administration. So I think we may see some direct-- or we may see some tumor effects. As you know, we have the large MA-32 adjuvant trial-- 3,600 patients-- which is about to be analyzed. It will likely be analyzed in the next two to three months, and we'll have a definitive answer as to whether Metformin will improve breast cancer outcomes. And because we're looking at contralateral breast cancers, we can also look at whether it impacts the development of breast cancer. SPEAKER 2: At night, do you look up at the ceiling and worry about things like everolimus and alpelisib that actually block the insulin pathway, and then we see hyperglycemia? I don't know if you've treated many people with alpelisib, but hyperglycemia is one of the major consequences of that. Could we actually be in a vicious cycle with using these drugs, or am I reaching too far? PAM GOODWIN: No, I worry about it. I do. It's the same with the IGF1 receptor blockers. I think that sometimes we don't look at the impact of a drug that we believe targets the tumor on the patient's physiology, and the patient's physiology may then actually impede the ability of the drug to treat the breast cancer. If we look at the use of, for example, aromatase inhibitors in premenopausal women, they raise the estrogen levels and the tumor may progress more quickly. We have an example of that. And I think whenever we're doing anything, we need to look beyond the drug itself to the impact-- the drug and the tumor to the impact it has on the patients. I mean, one of the really interesting things that I've seen recently is that some of the PD-L1 inhibitors, when you look at them used to treat cancers other than breast cancer-- I don't think we have this information yet in breast cancer-- being obese actually predicts a better response. So there's something about the synergy between the PD-L1 inhibitor and the obese physiology that makes the PD-L1 inhibitor work better. And some people think it's leptin that is playing a role, but I don't think that's been definitively established. SPEAKER 2: I was not aware of that. Actually, when I was at the Dana-Farber, Chuck Scher, who discovered PD, Platelet-Derived, growth factor, was an endocrinologist. He's a PhD, but he's an endocrinologist by training. And he used to tell me the cancer is just endocrinology gone wild, so you need to understand endocrinology if you're going to be an oncologist. And I'm learning that in spades now 40 years later. PAM GOODWIN: Well, when it comes to breast cancer, yeah, that might be true. Only-- SPEAKER 2: Well, especially in breast cancer, I think. Let's get away from breast cancer for just a moment. I'm towards the end here. And what do you think the role for obesity and diet in other cancers? Do you see such a strong association? And do you have optimism that the kinds of things you're doing in breast cancer will spill over to the others? PAM GOODWIN: So I think obesity is important for cancer in general. I think obesity is associated with increased risk of most types of cancer. And I think it's even more important in cancers like endometrial cancer than it is in breast cancer. I think that what we're learning about obesity and breast cancer will be applicable to multiple other types of cancers. One of the big things we need to think about, though, is that we're in the midst of an obesity epidemic. And at some point, this becomes a societal issue. Obesity is a bad thing for cancer. It's a bad thing for many other illnesses too. And it's probably contributing to a shortened life expectancy for obese individuals. And we need, as a society, at least in the developed world, to start thinking about what we are going to do to try to reduce obesity, to try to get people to eat healthy and to eat proper portion sizes, and to become physically active or to be more physically active. I put that in a very blunt way, but I think these issues extend far beyond breast cancer, far beyond cancer, and really into our general health and well being. SPEAKER 2: Yes, I agree. I've been fond of saying that I think obesity is the smoking of the next generation. I think we're going to pay the piper for this. PAM GOODWIN: I think you're absolutely right. And I think we have a generation that's coming up that maybe has never known proper portion size and knows, at a theoretical level, about healthy eating but doesn't understand how to put it into place and follow a healthy diet and be physically active. And because the obesity epidemic is really just the last generation or generation and a half, we should be able to turn it around. This is not something that's baked into our genes. This is something that we, as a society more so than as individuals, [INAUDIBLE]. SPEAKER 2: Well, and I think when we finally do recognize that and understand how to treat the obesity, people will remember that you were at the forefront-- I don't want to age you-- but 30 or 35 years ago when the whole field got started. So thank you for your courage in going that way. Many of us took the path of least resistance. I don't think you did. Anyway, so thanks for taking time to speak with us today, very much appreciated. And thanks for all you do for the field, and most importantly for our patients. I'm fond of saying that to almost all of our speakers. Without the people who have been on this series, we wouldn't be where we are today. So I'm very appreciative of it. Have a good day. Buh-bye. PAM GOODWIN: You too. Buh-bye. SPEAKER 2: Until next time, thank you for listening to this JCO's Cancer Stories, The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple Podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode. JCO's Cancer Stories, The Art of Oncology podcast is just one of ASCO's many podcasts. You can find all the shows at podcast.asco.org. [MUSIC PLAYING]

Confidence by Ash B. Alpert and Bahar Moftakhar. Read by Maggie Sheridan. Two fellows explore the feedback they received during training to develop confidence, or to appear confident. TRANSCRIPT SPEAKER 1: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. [MUSIC PLAYING] LIDIA SCHAPIRA: Welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org. SPEAKER 2: It was my first day as the hematology-oncology fellow on the inpatient leukemia service. I introduced myself to the team of residents and nurse practitioners who had spent the last month circling the sixth floor of the cancer center. The residents were nearing the end of their month-long rotation, and their faces reflected the sheer number of hours they had spent rounding, writing notes, and caring for their patients. They exchanged silly stories about their patients in hushed tones as if they were talking about peculiar relatives. The senior resident filled me in on their daily routine. "Now's your chance to grab coffee," she whispered to me like it was a secret. "We kind of just wait here until the attending is ready to round." As if cued, the attending appeared. The team created a semicircle around him. It was unspoken, but he was our leader. I awkwardly tried to figure out where to stand. I was told I was there to learn, but I was also supposed to lead. We spent the morning walking around the unit, and the residents and nurse practitioners took turns presenting their patients. The resident recited his presentation, detailing overnight events, sharing social history, and listing each abnormal lab. "Calcium was 10.3. Glucose was 123." I felt myself start to cringe, realizing how long rounds were going to take, but I remembered being in his shoes just years before and began to encouragingly nod along. He methodically reviewed each organ system, allotting the same attention to the normal blood sugar as the rising lactate dehydrogenase. I became aware that the team was looking at me as they presented. I nodded along as they spoke, jotting down notes to ask at the end of their presentation. The next presentation had only just begun when the attending cleared his throat to chime in. "Did the patient get platelets overnight? Did you notice the elevated uric acid? What day of the cycle are they on?" he said in one breath. I am sure they were getting to that, I thought to myself. The attending took over as I withdrew, and I noticed the team shift to him. It seemed as though the attending was thinking, "Let me just do this myself." The morning bled into the afternoon, and eventually, the carousel came to a halt. The team scattered to complete their task for the day, and it was just the attending and me left standing. He smiled at me. "Should we go to the ED and see the new patient?" The long walk to the emergency department was spent making small talk. He asked me about my family. I asked him about his. He asked about my interests. I asked him about why he became a cancer doctor. I began to feel at ease, although I could not stop thinking about how I felt so small compared with him just moments before. But now, I was an equal. We claimed a computer in the ED workspace and spoke in raised voices above the chaos and chatter. I told him everything I had read about the new patient-- a young woman who had come in overnight for progressively worsening fatigue, weakness, and dyspnea on exertion the last several weeks. She was found to have significant pancytopenia. Her case that intrigued me. The patient was my age, and for that reason alone, I already felt bonded to her. The attending scrolled swiftly through her labs, my eyes darting up and down the screen trying to keep up. She was hemolyzing. But why? My eye caught her negative DAT. "We should screen her for PNH," I said, pointing at the screen. I remembered seeing a similar case months ago. The scrolling stopped. "That is a great idea," my attending said. I began to relax. As we were wrapping up, I asked how I could be the most helpful during our week together. "You remind me of myself," he said to me. "I think you should be more confident. I know you have good ideas, but I want you to speak up." Confidence-- I nodded. I knew what he was trying to say. I was not loud. I was not the biggest personality in the room. I was not foreboding or scary. I met my co-fellow that evening for dinner. We debriefed the week over small plates of Ethiopian food. We talked about the word "confidence," and they told me their own story as follows. When I was called about a young patient with lymphadenopathy and splenomegaly, I was between one floor and another, trying to get back to my team on the ED. I had worked through lunch while we had spent the last few hours in the belly of the hospital, seeing patients while I continued to get phone calls about others. I figured I would take this patient. It was my turn to see a new consult, and anyway, evaluating patients for lymphoma was something I did frequently in the clinic. The resident who called told me that the patient was admitted with aphasia and left-hand weakness. She had a hemoglobin level of 4 grams per deciliter and a creatinine level of 6 milligrams per deciliter. Head computed tomography had demonstrated a right frontal lesion that did not properly explain the clinical presentation. By the time I was called, the neurologic symptoms had resolved. When I went to see the patient, she was curled up and holding the side of her face. She was thin and pale, beautiful, and clearly uncomfortable. Her sister told me the story, which included back pain, fevers, weight loss, and fatigue. The patient had started taking massive amounts of ibuprofen and stopped leaving the house. When I asked the patient what was bothering her the most, she told me it was the headache, and she seemed to have trouble keeping her eyes open, so I offered to turn off the light. After I left, I found my attending and one of the residents in a corner of the ED. The attending was sitting at a computer, reviewing the patient's chart. "Simple," he said, describing the case. He held a pencil. I started to tell my attending what had happened in June, and he interrupted. "What did she come in for? What were her labs?" I was having trouble stringing my thoughts and the story together. I felt dizzy with hunger, sleep deprivation, the attention of the resident, and my attending's rapid-fire questions. "I need a history," the attending said. "Exam? Assessment? Plan? What's the differential for her anemia?" I did not speak. "Reactive or malignant? What tests do you need?" The resident suggested an SPEP. "Do you agree?" the attending asked me. I shook my head. "No." It didn't fit with her headaches, the neurologic findings. "Back pain, renal failure, constitutional symptoms-- you have to think about myeloma," the attending said, putting down his pencil. I felt hot shame. The next morning, the resident on the primary service paged me to tell me that the patient was going into the intensive care unit. She'd had a seizure. One of the residents pulled up her imaging, and we saw a bleed that had bloomed in her brain. I woke up in the middle of the night thinking about her, imagining the blood in my own brain, a feeling like wetness. She was two years my junior, 42 years old. The next day, when I opened the patient's chart, I found she had died overnight. There was not a death note, just vital signs that trailed off. That day, my attending gave me feedback. "You're good," he said. "You just need to have more confidence. You learn the most from putting your ideas out. If you're wrong, then you will learn." I nodded, but I was thinking about the culture of medicine, the way he forged ahead with his differential and missed the diagnosis-- endocarditis with bleeding septic emboli. I was also thinking about the other times I had heard this feedback. In residency, my intensive care unit attending had told me to be more confident and suggested I be more like one of the male residents, who was loud, brash, and arrogant. I had not wanted to be like that resident, and I did not want to be like my hematology attending. His confidence had translated to rudeness and allowed the diagnosis to elude his grasp. His feedback had left me without steps I could take to avoid the missed diagnoses in the future. I would have liked to review the case with him, working through it to figure out where we had gone wrong. Perhaps I had also been hoping for an apology for the way he had acted toward me or remorse about the case, which I did not get. I called my friend Bahar the day my patient died. I expressed my deep sorrow for our patient, for our inability to help her, and my anger at my attending. She listened intently and expressed her empathy and her caring. She carved out room for my grief, my real self, and an alternative to business as usual in medicine. Oxford dictionaries define confidence as "the feeling or belief that one can rely on someone or something, firm trust, as in, 'We had every confidence in X,' the state of feeling certain about the truth of something, or a feeling of self-assurance arising from one's appreciation of one's own abilities or qualities." However, feedback to be more confident from male physicians to those of us who are not men conveys more than what is explicitly included in this dictionary definition. In the commentary that follows, we share our concerns with this feedback to female, transgender, and/or nonbinary trainees and provide our own suggestions about transformative feedback that makes room for all of us in medicine. In 2013, Sheryl Sandberg wrote a book called Lean In, which was marketed as a feminist manifesto and provided women with tips to succeed in a male-dominated business world. More recently, the book has weathered considerable criticism for advising women that they will succeed if they simply get out of their own way and work hard. The critiques suggest the Lean In strategy "hands a rubber ducky to someone hit by a tsunami and then inadvertently encourages us to internalize our own discrimination, leading us to blame ourselves." Providing women, transgender, and nonbinary medical trainees the advice to be more confident has similar drawbacks. This feedback suggests that we would be more successful if we simply stop doubting ourselves. This message makes invisible the structural inequalities in medical training-- the barriers we as marginalized people face in accessing training and the micro- and macroaggressions we face along the way. For those of us who have been marginalized, those of us who are people of color, people with varying abilities, transgender, women, and/or queer, being asked to be confident is like asking us to step into a store where we have been accused of stealing and act like we own it. This advice puts the responsibility on those who have been harmed to engender respect. Telling us to be confident also suggests assimilation into a hierarchical culture instead of changing that culture to be more just. Espousing confidence as a vital quality among physicians and trainees has additional drawbacks. Confidence supports the enterprise of medicine and promotes the status quo. If physicians act self-assured, perhaps our actions, individually and collectively, will not be questioned. Confidence provides us with a means to avoid considering the ever-present possibility of error that we will cause harm. In this way, espousing confidence may make us overlook varying viewpoints and perspectives and block potentially transformative changes that could make medicine a more healing practice. In fact, confidence may reinforce hierarchy. If those of us who can access self-assurance espouse it without thinking, we may reinforce power imbalances between colleagues or patients and physicians. Confidence relies, in part, on pattern recognition-- for the problems people are presenting with to fit into simple, definable entities. Our patients who have concerns or symptoms that do not fit into a usual pattern may be dismissed or shuttled into a category that does not quite fit. These missed or incorrect diagnoses may lead to considerable harm. Additionally, confidence may not leave enough room for uncertainty, and much that is beautiful in medicine is uncertain and/or could not be immediately known to us-- how a specific patient will feel at a particular time, how a particular patient will do with a given treatment, and when a particular patient will die. If we as physicians do not leave room for our own uncertainty, how will we be able to be present with patients' uncertainty about the next best treatment decision or about their futures? Feedback is at the heart of apprenticeship and provides a formal mechanism by which trainees can reflect on their own progress and have tools with which to grow. Feedback should be nonjudgmental and kind. Moreover, feedback should be specific to the trainee and about their observable behaviors. Feedback could offer trainees suggestions on improving clinical problem-solving, empathetic and patient-centered care, and/or working with a team. Ideally, feedback would be bidirectional, thus also providing input to established physicians and creating non-hierarchical care-- ugh. Ideally, feedback would be bidirectional, thus also providing input to established physicians and creating non-hierarchical-- hierarchical-- ideally, feedback would be bidirectional, thus also providing input to established physicians and creating non-hierarchical care teams that support all members. Trainees, who often reflect more diverse identities than their attendings, could offer feedback on providing patient-centered and non-paternalistic care and cultural humility. In this way, feedback could be a mechanism not just for the growth of individual physicians but for the transformation of medical systems. This may be the only path forward to creating medical training and medical care that is truly inclusive and supportive of all of us. [MUSIC PLAYING] LIDIA SCHAPIRA: Welcome to The Art of Oncology podcast. With me today are Dr. Bahar Moftakhar and Dr. Ash Alpert. Welcome to both of you. ASH ALPERT: Thank you. It's good to be here. LIDIA SCHAPIRA: It is unusual for us to have an essay submitted by two authors. So I would love for you to tell the listeners a little bit about what led to this writing collaboration and what the experience was like for you. ASH ALPERT: Bahar and I were just actually talking about that then-- I don't know, maybe one or two years since we first had the conversation that led to this paper. And we just decided to go out to dinner, and she told me this story that she related in the first part of the essay. I think that sometimes you don't see something clearly until somebody you love has an experience you can relate to. But it was so clear to me, listening to the story she told me, that the feedback that she was getting to be more confident in a clinical setting sounded like misogyny and sexism more than anything else to me. And strangely, maybe a few weeks to a month later, I had a really distressing experience with a patient, and when I tried to debrief with my attending, he gave me the same feedback. And so at that point, we started talking about collaboratively writing about what does it mean to be told to be more confident and trying to unpack our experiences in medicine through that one. BAHAR MOFTAKHAR: Yeah, I agree with Ash. I think, as the readers will see, this piece revolves around a similar experience we had in which we were told by a superior that we need to be more confident. And I remember after my experience, when I was reflecting on that day, I was aware of how mundane that day seemed, and in fact, the feedback of being-- be more confident seems like such a benign comment. But I couldn't really understand why that feedback packed such a punch to me. And when I spoke to Ash about it, and later, when they shared a similar story that they had experienced, it really made us want to unpack that feedback and understand why the word "confidence" resonated with us so much. It was-- I very much enjoyed collaborating with Ash on this piece. I don't have any formal creative writing training, and my writing has always been deeply personal and for myself. So I looked a lot to Ash for their guidance and their input through this process. So first, it was nice to be able to share this vulnerable moment with someone and then also going through the challenge of making sure both of our viewpoints were heard and then working on the revisions, and that whole process was extremely rewarding, and I very much enjoyed working with Ash. LIDIA SCHAPIRA: So let's talk a little bit about the conversation and the writing and how it helped you to process what sounds like an important formative experience, where it could be that you could have done this over some feelings you had about a patient. But in this particular case, what both of you are really talking about is the experience of being a trainee in a highly pressured setting, right? So talk a little bit about the writing itself and the process of getting from these experiences and thoughts to an actual essay that you can now share with other readers. ASH ALPERT: Actually, I think that a very important moment for me in the process of writing and editing this paper was meeting with you, Lidia, and hearing you say something about having had a similar experience. And during that conversation, I remembered that when I was an attending before I went to fellowship and I often used my first name with patients, that one of the advanced practice providers that I worked with told me that I should stop doing that because men are always-- are often referred to by Dr. So-and-so, and women, which I identified with at that time, are referred to by their first name. And I remember thinking and telling that person that I do not have interest in being more similar to men attendings than I already am. And I think that came up in the conversation that the three of us had about this [INAUDIBLE] and really helped me to identify and unpack what it-- one of the aspects of what was going on, which was that in my way of being in medicine and in my way of thinking about medicine, perhaps I was [INAUDIBLE] some of the ways that hierarchy was manifesting itself. And when I got the feedback to be more confident, I felt that I was being told to try harder at a system that wasn't working for me. And I think that for those of us who don't find that we're heard or seen in medicine or other spaces in our lives, we feel that the answer is to try harder, to speak louder, really makes invisible those experiences and also creates an impossible path. BAHAR MOFTAKHAR: Yeah, I think this piece was important to share because it will resonate with a lot of trainees, especially certain groups of trainees who aren't able to harness confidence readily for whatever reason that may be. And I think it will also resonate with our mentors and teachers who provide feedback to trainees because it highlights the importance of giving quality feedback that's something that's tangible and actionable. I don't know about Ash, but as we were writing this piece, I think one of the challenges was really dissecting what confidence is. Is this different from being overconfident? Are the pitfalls of confidence one that transitions into arrogance? And I think that we tend to perceive the person who's the loudest in the room or the biggest presence, the first to speak, the person who's interrupting or interjecting as the person who's most confident. And by virtue of how we define confidence, we tend to think that person is always right and has the answers. And I think that we forget that these qualities come more naturally to certain groups of people, and in medicine, that's historically men and particularly white men. And I don't see confidence as something that you can just switch on or off, which is implied by the feedback of "be more confident." I think that we can change our behaviors to appear more confident for a period of time, but that assumes that those of us who are marginalized are holding ourselves back and really ignores the systemic issues that are in medicine for these marginalized groups of people. LIDIA SCHAPIRA: So let's talk a little bit about how to make medical training or oncology fellowship safe, a place really of growth and recognizing that the work that we do and that we ask you to do all the time is really very difficult, emotionally charged, and you're working at a very fast clip and under a lot of pressure. So as you imagine yourselves now transitioning to being attendings, tell our listeners a little bit or one or two things that you'd be sure to do to create those kinds of safe learning environments. BAHAR MOFTAKHAR: I think that there really needs to be just an open dialogue and space for everyone's thoughts and ideas to be heard. I think in the hierarchical medical culture it can be a really dangerous thing. Early in our medical training, we adopt this hierarchical thought process every step of the way. And when you're someone who's marginalized, advancing in this hierarchy is pretty challenging, and it's due to barriers we either put on ourselves or institutional barriers. And then this perpetuates what hierarchy looks like and then muffles the voices of those people who have different experiences or viewpoints. And so people who are lower on the hierarchy, whether that's a medical student or a resident or fellow, feel uncomfortable speaking up or voicing their suggestions or concerns. And then this lack of diversity of perspectives then has consequences on patient care. So I don't know what the solution for change is, but like I said, I think it starts with open dialogue, education for everyone at every level, and hopefully, this can create a safe environment. And as Ash and I are coming to the conclusion of our training and, in a sense, moving up this hierarchy, I hope we remember this and continue to create space for everyone. LIDIA SCHAPIRA: So before we go to Ash, let me ask you a follow-up question. Imagine yourself now a few months down the road. You are the attending coming in to meet your team. How do you greet your team? BAHAR MOFTAKHAR: I would introduce myself as Bahar, and I think I would remind whoever is on the team that I was there where-- whatever level of trainees I have with me that I was there in their shoes. And I would let each of those trainees introduce themselves and be heard and ask them like you did, Lidia, before we started the interview what-- how they want me to address them and things like that. Though I think it starts with grace and kindness, it's such a simple thing, but I think that's really the foundation of how we can change the medical culture. LIDIA SCHAPIRA: So a moment of empathic connection, right? And you seem to me to be anti-hierarchical. BAHAR MOFTAKHAR: Absolutely. LIDIA SCHAPIRA: I look forward to having another conversation with you in a few years and ask how it's going. So let me ask Ash the same difficult question. You're now leading a team. How did this go for you? ASH ALPERT: Yeah, so I think taking a step back even, I mean, I wonder how the system could change overall such that the structure of leading a team maybe didn't exist in the same way, because I feel like once I'm already leading the team, I'm in a position where it becomes really hard to connect with the other people on the team in a real, authentic, and safe way because the hierarchy itself isn't particularly safe. So I wonder if there is a way going forward to re-imagine medical system in a way that could really provide an opportunity to decrease disparities, make them safe for trainees and everyone else, and the patients as well. I think that we probably need to think about the ways that we're using the labor of [INAUDIBLE] as well and how that impacts emotional and physical wellness. And there may be many other steps that we need to take to create spaces that really make room for everybody in a safe way. LIDIA SCHAPIRA: So Ash, let me follow up with another question for you, and that goes back to the theme of your essay and what brought us together, which is confidence, right? So you talk a lot about the appearance of confidence in the eyes of others and not relating to that. What is confidence for you now? And how do you think about it, or do you even think about it? ASH ALPERT: Yeah, so I guess what I started to realize as I was writing the paper that maybe the question of confidence is just the wrong question. And that it becomes a surrogate for telling people that they're the problem, as opposed to the system being the problem. So I think confidence can be a surrogate for being able to succeed in capitalism, for example. And so I've stopped thinking about it as a goal that I want to attain, but thinking about it more in terms of what are the implicit messages and how can they be made explicit and then shifted. LIDIA SCHAPIRA: So a question for each one of you is this, what would be the top values in a system that delivers patient care and trains the new generation of specialists or physicians? What kinds of values would you hold high? BAHAR MOFTAKHAR: I think that rather than there being an emphasis on confidence and this self-assurance trait, that I would say should be valued is self-awareness. I think someone who knows their limitations, who knows when they don't know the answer, who knows when someone else probably knows the answer better than they do, who knows that they don't have specific interactions with different groups of people and who wants to learn, I think that is a trait that's very valuable in the medical culture. And I think that for someone to allow uncertainty in their practice is such a beautiful thing, and that's something that I think we should appreciate. LIDIA SCHAPIRA: So I'm hearing, in addition to self-awareness, a little humility and curiosity. BAHAR MOFTAKHAR: Yes. LIDIA SCHAPIRA: All right, let's turn it over to Ash. ASH ALPERT: I think actually that sums it up pretty well. I mean, I was thinking of things like patient-centeredness, cultural humility, humility in general, willingness to ask deep questions. But honestly, I think that those three things would really be the basis of very high quality care. LIDIA SCHAPIRA: Do you think that the experiences you had that inspired you to think about this are pretty universally shared by other trainees? Can you stay a little more about that? ASH ALPERT: Interestingly, one of my attendings who knows about the piece told me that he was interested because he hadn't had this experience. So he asked his wife and daughter if they had experiences like this, and they both said yes. And it was a surprise to him, but maybe a good way for him to connect with other people in his life. And I definitely have heard this experience from many, many people who are not men in particular. BAHAR MOFTAKHAR: Yeah, I agree. I shared this experience with my younger sister who's in medical school right now. And I think she was telling me that even early on in the medical training that she's had experiences like this. And for me, my experience with confidence through my medical training rose early on like her. And my personal experiences are heavily tied to gender and I think that these moments appear subtle. In medical school on clinical rotations, it would be when a male colleague would speak over me. And in residency, it would be when the patient directs their questions to the male medical student. And I think we see those qualities and behaviors that we classically associate with confidence continually being rewarded. So these tiny moments of microaggression tend to add up and contribute to how you feel about yourself. So when we hear feedback about being more confident with no further elaboration on how to do that, it tells us that we need to change your behaviors and act in a certain way. And it really discounts the work that we do and the knowledge that we have and patient care that we deliver. So it kind of makes us feel uncomfortable. So I think, like Ash was saying, there are certain groups of people who have had similar experiences like we've described in this piece. LIDIA SCHAPIRA: I wonder just seen through the sexism lens-- and there are many other ways to look at this, of course, and we barely skim the surface of this in our conversation-- I wonder if you asked all of your female attendings if they've experienced similar moments. And my hunch is everybody will say they have. And I think that different words have been used through the ages-- assertiveness, aggressiveness, and now we're down to confidence, which seems a little blander. But as you say, it really camouflages a much deeper sexist message, which is more, I think, be like me, be like us, right? I mean at least that's what I have taken away from this. And you're nodding, but our listeners can't see the nods. So I'm going to ask you to just say a few words. I'll let you finish with a message, again, that hopefully will inspire those who are listening to the podcast. ASH ALPERT: So in some ways, it seems like an invitation to assimilate and leave other people behind. And I wonder if instead we could do the hard work of looking at our medical systems and figuring out how we can get them to really make space for our patients and make space for each other. LIDIA SCHAPIRA: Bahar, do you want to say a few final words for our listeners? BAHAR MOFTAKHAR: This piece, like you said, this word confidence seems like such a mild, bland, benign term. But for me, I was so surprised the emotion it evoked in me when I first heard it. And I think there are many layers to this. One is that being told to be more confident insinuates that there-- implies that there are these certain characteristics that we should embody and that's how we can get ahead. And those are certain characteristics that don't come naturally to some people. And I think that confidence as feedback is very challenging because it's hard for someone to understand what to do with that feedback. Is this a reflection of my medical knowledge? Is this a reflection of my patient care? So I think the other takeaway I would take from our piece is really looking at how to give feedback and receive feedback. LIDIA SCHAPIRA: Bahar and Ash, I really want to thank you for submitting your piece, for bringing this very important conversation to the attention of the readers of JCO. And I look forward to continuing our conversation perhaps in person, if that ever happens again. And again, thank you very much for submitting your essay and I hope all goes well. Until next time, thank you for listening to this JCO's Cancer Stories, The Art of Oncology Podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple Podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode. JCO's Cancer Stories, The Art of Oncology Podcast is just one of ASCO's many podcasts. You can find all of the shows at podcast.ASCO.org. [MUSIC PLAYING]

Dr. Hayes interviews Dr. Allen Lichter for a second time on ASCO. Dr. Daniel F. Hayes is the Stuart B. Padnos Professor of Breast Cancer Research at the University of Michigan Rogel Cancer Center. Dr. Hayes' research interests are in the field of experimental therapeutics and cancer biomarkers, especially in breast cancer. He has served as chair of the SWOG Breast Cancer Translational Medicine Committee, and he was an inaugural member and chaired the American Society of Clinical Oncology (ASCO) Tumor Marker Guidelines Committee. Dr. Hayes served on the ASCO Board of Directors, and served a 3 year term as President of ASCO from 2016-2018. TRANSCRIPT SPEAKER: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. [MUSIC PLAYING] DANIEL F. HAYES: Welcome to JCO's Cancer Stories-- The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insights into the world of cancer care. You can find all of the shows, including this one, at a podcast.asco.org. Today, our guest is Dr. Allen Lichter, the former CEO of the American Society of Clinical Oncology. Dr. Lichter has previously been a guest on this program in regards to his role as a radiation oncologist back in the early days and the research he did. But today, I'm going to ask him more about the history of ASCO. To begin with, Dr. Lichter has leadership roles with Cellworks and Lifelike. He has a consulting or advisory role with Integra, Ascentage Pharma, L-Nutra, and TRG Healthcare. He's also received travel accommodations and expenses from Cellworks. Dr. Lichter, welcome to our program again. ALLEN LICHTER: Dan, it's great to be here. DANIEL F. HAYES: Terrific to have you. As I said, the last time we spoke, I really was focused on having you tell us about the evolution of radio psychology in this country, and was a terrific interview. I hope our listeners have had a chance to listen to it. But since you've had so much to do with ASCO, you've been a president of ASCO, you've been a CEO of ASCO, you're pretty much done it all, I thought we'd take an opportunity to pick your brain about the history of ASCO. So to start with, I think a lot of our listeners probably don't know much about how ASCO got started in the first place. You want to give us a little background about that? ALLEN LICHTER: I think to understand ASCO, you have to go back, really, to the very beginnings of medical oncology. In the 1940s and '50s, a few chemotherapy agents were invented and brought into practice. Toxicity was high. The benefits weren't that great. But there was some hope that through scientific discovery and research, things could get better. In 1954, the NCI created the first National Drug Discovery program, which began to catalyze the discovery of more chemotherapy agents. And it's into that environment that a group of, who were then internal medicine docs, started to use chemotherapy more and began creating some training programs in medical oncology. That led in the early '60s to an organizing meeting that took place at AACR. And there were 50 attendees. It was on November 4, 1964. So here were these physicians who were interested in cancer, who got together at the American Association of Cancer Research and formed an organization concerned with the management, the clinical management, of cancer. And you go back to that early meeting and read the following sentence, quote, "This society shall not be a society of chemotherapeuticsts only. The society should consider the total management of cancer." They established dues of $10 a year, and they agreed to meet again at the following spring. And on April 10, 1965, at the next AACR meeting-- or, actually, the original meeting was off cycle from AACR. And then, in '65, they met formally at AACR for the first time. That sentence, that this is not a society of chemotherapeuticsts, as they wrote it-- because there were no medical oncologists-- but was a society for cancer physicians of all persuasions, was a fundamental organizing principle of ASCO, a principle that holds true today. And it is one of the great strengths of ASCO, is that it welcomes and embraces and enjoys the membership of oncologists of all subspecialties. And then, as you move ahead in the development of medical oncology, you get to the American Board of Internal Medicine that had pressure from outside agitators, people like PJ Kennedy and Paul Calabrese and Paul Carbone, and Jim Holland and Tom Frei and Al Owens, to form and create a subspecialty board in this nascent specialty of medical oncology. And that came into fruition in the early 1970s. And if you go back into the '70s, ASCO had a revenue of $25,000. That was the annual revenue of the organization. It's now probably close to $150 million. And ASCO is number two in terms of the size of its revenue of all medical professional societies in the US behind only the American Medical Association. So that first idea of founding the society, creating it as a multidisciplinary society, and standing back and watching it grow as the specialties in oncology grew, has really borne fruit over many, many years. There were seven founders of the organization. Their names are in the ASCO office. People who come to the ASCO office can come into our big boardroom, which is called the Founder's Room, and see the bios of Fred Ansfield, Robert Talley, Harry Bissell, William Wilson, Herman Freckman, Edonis Goldsmith, and very specially, Jane Wright-- Dr. Wright being not the only female in this group at the time, one of the few African-American medical oncologists in the nation. She had a distinguished career and has had many awards and tributes given to her both by ASCO and by AACR. So the society moved along. And I like to say to people, you know, what is really startling is that the field of medical oncology, the medical oncologists forgot to establish the American Society of Medical Oncology. They are, to this day, the only medical subspecialty in internal medicine that does not have its own dedicated professional society. ASCO has filled that role from its inception through the time that the specialty boards were created. And to this day, there is no ESMO, there is only ASCO. And so ASCO has this dual organizational responsibility, one to the entire field of oncology, and then a very special relationship with the field of medical oncology, as we represent that specialty almost exclusively. DANIEL F. HAYES: Let me jump in. There, for example, is a Society of Surgical Oncology and the American Society of Therapeutic Radiation Oncology, which I believe you were president of as well. So I agree with you that the internal medicine part of it is really unique in terms of ASCO serving as a society for everybody, even though there are these other societies that represent the individual modalities. ALLEN LICHTER: Yes. There is nothing quite like it. It has worked well. We have never, to my knowledge, had an uprising of the medical oncology specialty saying we need a different organization. The community oncologists form the Community Oncology Alliance, COA, which is a thriving organization that pays a lot of attention to those special needs of community practice in oncology. But even then, virtually all the members of COA are members of ASCO as well. So as the society moved along and it grew beyond its $25,000 revenue, we hired a professional management firm to run the administration of the society, a firm called Bostrom. They were based out of Chicago. And for many years, a guy named Al Van Horn was the executive director of ASCO. He was an employee of Bostrom, but his salary was paid by ASCO. And the society grew, but we retained this relationship with ASCO until we got into the early 1990s. I was on the board at that time, but I'll digress for a moment to talk about how I got on the board. So at the annual meeting of ASCO, they always had a member's meeting. And it was like at 4 o'clock in the afternoon. And it was in one of the meeting rooms. And the dais was set with a long table. And the board of directors sat at the table. And the membership who, those that came, sat in the audience and heard from the leaders of the organization what was going on, et cetera, et cetera. And then, they had open mic that members could come forward and ask questions. So I arose from my seat and went to the microphone. And I said, gentlemen-- because they were all men-- you have extolled the multidisciplinary nature of this organization that existed from its founding up to the present day. But as I look at the assembled board in front of me, they are 100% medical oncologists. And you have radiation oncologists and surgical oncologists and pediatric oncologists and gynecologic oncologists and so forth in the organization. And we have no representation on the board. And they said, thank you, Dr. Lichter, for your question. And down I sat. But a little seed was planted, I guess. Because over the next couple years, the board decided to enlarge its membership and have dedicated seats for a radiation oncologist, a surgical oncologist, and a pediatric oncologist, seats that exist today. And I got a call, OK, big mouth. You raised this. You raised this. We're going to run you for the board. And I said OK. And I got elected to the board as the first radiation-- sitting in the first radiation oncology seat. I watched as the society grew. And we recognized, we needed to take over our own management, to move away from the hired hands at Bostrom and to have our own organization. And it was under the steady hand of then President John Glick, who led us through this transition. We interviewed candidates to be the then called the executive vice president and hired John Durant, who was then at the University of Alabama. And John took us through that transition. We opened an office in Alexandria, Virginia, and began to hire staff. And John was an absolutely sensational leader for the organization during that important transition. And that was in kind of the mid '90s. John Glick was one of the truly terrific presidents of ASCO. And I contributed to that because I ran against John. And John wanted an election. And it was my doing that John became president of ASCO. I graciously lost to him. They decided, for some reason or another, that they would run me again for president. And I did win that election. I ran against Charles Balch, who was a surgeon. And Charles later succeeded John Durant as the CEO of ASCO as ASCO's second CEO. I was president '98-'99 was my year. And the organization continued to grow. I rotated off the board and was happily in my job at Ann Arbor. And then, Dr. Balch was stepping down and they were looking for a CEO. And I threw my hat in the ring and became the CEO of the organization in 2006. And that's a big, broad overview of the organization. It now has 45,000 members, as I say, a wonderful and steady revenue stream, although it's been a challenge over the last 18 months with COVID and losing the physical annual meeting. But those are the broad brush strokes. DANIEL F. HAYES: So my impression, and correct me if I'm wrong, I mean, the original seven founders, I've read the minutes of the original meeting. And they were pretty interested in how do you dose reduce? How do you get this drug? How do you get that drug? And I think there was maybe one or two scientific presentations. But correct me if I'm wrong. By the time came on the board, ASCO was principally a place to present your data and publish your papers in JCO. By that time, personally, I feel that it began to roll back into saying, look, 60% to 70% of our members are community oncologists. And I've seen a huge increase in ASCO's focus on the community oncologist. Is that perception all true, or am I making it up? ALLEN LICHTER: I think that that's true. If you look back at the first annual meeting in 1965, I think there were three or four papers presented. They were all clinical, and in some respects, as they should be. Because people wanted to begin to share their experience with using these new highly toxic agents. There was just no precedent. Everything was done through trial and error and clinical research and experimentation. And so the results were shared. And the society continued along in that vein not so much as a pure scientific society, and certainly, not so much as presenting basic science research, but presenting clinical research. I think at the time, it was felt that the more pure science was AACR. And ASCO was going to present the clinical stuff. And as you know, for the first many, many years of the society, the two societies met back-to-back. So a typical meeting in the 1980s was Monday and Tuesday was AACR. Wednesday was an overlap day, and then Thursday and Friday was ASCO. And so that dichotomy of, there is the science, especially the bed science, and there's the clinical science at the end of the week, existed for quite some time until ASCO grew its meeting enough, worked out an arrangement with AACR, and the two meetings divided, with AACR meeting in April and ASCO meeting in June-- again, something that still exists to this day. DANIEL F. HAYES: When you were CEO, though, for example, you initiated the Department of Clinical Affairs or something to that effect. And also, how did the affiliates begin to grow up? I mean, it was all news to me when I became president. I knew nothing about that. ALLEN LICHTER: Over the years, not only did ASCO develop as a national organization, but within each state, either a medical oncology or an oncology writ large society was formed. And just about every state had them. It was not a revolutionary idea to begin to try to tie the affiliates into ASCO. Not that were floundering in any way, but they could use some support speakers to be arranged for their own annual gatherings. And we became much more interested in making sure there was a dialogue between ASCO central and what was going on in the trenches of physician practice in the community and around the states. And so we began to bring the state affiliates closer to the organization. A lot of this was done under the guidance of Joe Bailes, who was president of ASCO after me and had a prominent role in the government relations aspects of reimbursement aspects of the specialty. And Joe was very close to the state affiliates. That grew in importance and we ended up creating the state affiliate council and hearing from them at each board meeting and then finally, to the point where we had the president of the state affiliate council who was invited to attend every board meeting, and to be part of the board deliberations. So it's complex to knit the whole thing together. Medical oncology really, in essence, grew up as an academic discipline. It was started at major medical centers like Sloan Kettering and MD Anderson and so forth. You might be too young to remember, but patients used to be admitted to hospital to receive their chemotherapy. And they certainly were admitted, often admitted to hospital to receive their radiation to some extent, because insurance wouldn't pay for it if it was given-- and there was no such thing as outpatient cancer therapy. But as the specialty then began to move out of these large academic hospitals and into the community, that began this whole infrastructure of state affiliate societies and our relationship up and down. We are not just an organization of academics, although we've been led mostly by academic physicians throughout our history. The community oncologists have a very important role to play not only in ASCO, but in the delivery of cancer care in this country. DANIEL F. HAYES: Actually, I am old enough. I remember I told many fellows that when I was a fellow, we put people in the hospital. All we had was prochlorperazine, Compazine, which doesn't work at all. And we would give them barbiturates not because it kept them from throwing up, but it kept them from remembering how much they threw up so they would come back and get their next treatment. So it was pretty barbaric. Now, all outpatient, which is fantastic. Actually, you touched on this briefly, but how about the evolution of ASCO as an advocacy organization in politics, which has taken a major step lately? ALLEN LICHTER: Even while we were under the management of Bostrom, we did have a legislative government relations team in Washington. And the first couple of fulltime employees that ASCO had were hired in the government relations side. And a lot of this was really, again, we had to represent medical oncology in important areas of billing and reimbursements and Medicare coverage and Medicaid coverage, and so on, and so forth. And as I said earlier, there was no one else to do it. We were, by default, those specialty society that was going to represent medical oncology. So we had to do that. The surgeons had their own. The radiation oncologists had their own, and so on, and so forth. But ASCO did that relatively early on. And of course, as the complexity of Medicare and Medicaid and private insurance, and the cost of care and inpatients and outpatients, and who's going to pay for what, where, and so on, and so forth, we have become deeply enmeshed in that. Because, again, it's our responsibility to do so. And I think the society over the years has done an excellent job of representing this field. DANIEL F. HAYES: Even to the extent that recently, we've set up a separate business, I think it's called the Association of ASCO, or ASCO assoc-- I can't remember what it's called. ALLEN LICHTER: Yeah, I think it's the Association for Clinical Oncology. Anyway, it's named so that it can also be called ASCO. But when ASCO was founded-- and this makes us different from a lot of our sister societies-- we were founded as a 501(c)(3). That's the tax code, educational organization. And as a 501(c)(3) educational organization, we could not engage very much in what is known as lobbying. We could advocate for legislation. We could do some gentle advocation for legislation. We could interface with regulatory agencies. So we were unlimited in our ability to talk to the FDA or the CDC or the Centers for Medicare and Medicaid and that. But we couldn't do very much on the legislative side. And we thought for a long time about whether that needed to be remedied or not. In the end, it was decided it did need to be remedied. That is, we needed to have the ability to have a bigger footprint inside Capitol Hill in the legislative process. Virtually, all our sister societies had that. And many of them were founded as-- and I'm not a tax expert but-- a (c)(4) or (c)(6) organizations, which gave them that ability. And ASCO was a (c)(3). in the end, we formed a new (c)(6), which is this Association for Clinical Oncology, that allows us to have a more visible presence on the legislative side of the house and the ability to influence legislation on behalf of cancer patients and cancer physicians. DANIEL F. HAYES: Yeah, I think most of our membership, probably especially the academics, have always just thought, well, I don't have to worry about this. ASCO has my back. And what I have seen in the last 10 years is, first of all, an increasing presence of ASCO on Capitol Hill. Again, many of our listeners may not know this, but twice a year, there is a so-called day on the Hill. And even when I got elected, I think there were 40 of us that did this. I had never done it before. It was a lot of fun, where we go out and meet with the senators and representatives and their staff, and with specific issues that we think are important for our patients. We just did this virtually last week. And I think there were 130 of us or something. That's increased quite a bit. And those discussions are now being led by what is essentially a PAC, a political action committee, this association but with a lot more influence that has had in the past. And I know I sound like I'm on a soapbox, but I've become a true believer, maintaining what you and your predecessors continued to emphasize, which is that we are not a trade union. We are there to improve patient care. And that's what we do. The topics we choose to discuss are related to things we feel need to be legislated for the purpose of improving patient care. I'm actually very proud of this, which is why I'm discussing it. I've had nothing to do with it except show up. I'm proud to ASCO who's done this. ALLEN LICHTER: Yes. And with the political action committee, it does give us the chance to have a presence at certain events that before, we couldn't, we could not have a presence then. It allows us to have influence as we can support those legislators that are sympathetic to the work that we're trying to get accomplished, and so on, and so forth. We resisted it for so long, it was time and the appropriate thing to do. And I join you in being proud of the organization to have just done it. DANIEL F. HAYES: So that's an advertisement. If any of our listeners would like to become part of the day's on the Hill, if you go into the volunteer corps, you can sign up and ASCP staff will then teach you what you need to do and how you need to do it, and how you need to say it. You can be part of this, and it's actually a lot of fun to do. And this association has very real guardrails set up so that we continue to advocate and lobby, again, for what we think is best for our patients. And that's another reason I was very supportive of it when it came around. ALLEN LICHTER: Your mentioning of volunteers makes me want to comment. Many of our sister societies, when I was CEO, the organizations that got together a couple of times a year were saying how difficult it was to get members to participate in the work of the society. Everybody was so busy in their practice environment, or their academic environment, or whatever. ASCO has always had exactly the opposite problem. We have way more of our dedicated members who want to participate in the society than we have places for them to participate. So it's a wonderful problem to have. It has been that way for as long as I can remember, and continues that way today. It's a real tribute, I think, to the specialty as to how dedicated our members are in being willing to volunteer and serve, and really devoting a huge amount of time. You've been president. You've been on the board. That service is all volunteer and takes, over a career, hundreds and hundreds and hundreds of hours. But people do it actively and willingly. And our only problem is I wish we had more spots for people to have positions inside the organization. DANIEL F. HAYES: When I became president, I think I had 220 slots, or something like that, to fill. And I had something like 2,000 people volunteer. And I agree with you. Actually, was it under your watch that the designated seats for community oncologists for the board became a reality? Or was that before you? ALLEN LICHTER: That existed before. That was added. And I can't remember if it was added at the time the subspecialists were added or whether it came a separate thing. But yes, and it goes to what we were talking about before, which is with community oncologists, we felt very important even as today, that they needed a seat at the table for ASCO. So we have this dedicated seat for a community oncologist, and even have brought community people into the undesignated seats. We learn a lot from our community colleagues and need them and have them close at hand. DANIEL F. HAYES: I have said many, many times before I was on the board and when I was president that the academics, including myself, will speak up to show you how smart they are. But the community oncologists on the board were there for a very real reason. And I learned very quickly my first year on the board, keep my mouth shut and listen to these folks because they had a lot to tell us. They're there because they want to make things well. I think the academics are too. They want to make things better. But the community oncologists are giving money up out of their pocket. They could be seeing patients. And they're there on the board because they feel that they have a real set of concerns. And again, I'm proud of the fact that the board of directors is made up of a fair number of them who have really been instrumental in what we do and how we do it. ALLEN LICHTER: Yeah. I have to be a little bit of a Homer and say, that certainly, Dan, you're at the University of Michigan. And I used to be at the University of Michigan, but we've had three presidents of ASCO in modern times, my presidency and your presidency, and now Lori Pierce. And of course, two of those people are-- DANIEL F. HAYES: Actually, Doug Blayney, so four. ALLEN LICHTER: Doug was president while he was at Michigan. Absolutely, don't want to forget Dr. Blayney. And of course, two of those presidents were radiation oncologists from the department I used to lead. And we are very proud of the work that the Red Hawks from Michigan are doing inside ASCO. DANIEL F. HAYES: Go blue. I think that pretty much uses up our alotted time here. Is there anything else about the history of ASCO you think that our listeners ought to know about that they might not? ALLEN LICHTER: You know, we are regarded as really, a highly successful and highly effective society. Many organizations in medicine have come to look to ASCO for ideas, for policy positions, for ways of running the organization. We have a fabulous staff made up of both of about five physicians in our senior staff and a number of distinguished professionals who support our policy and membership in meetings, and so many other parts of our organization. We created the Journal of Clinical Oncology out of nothing and built it into the most important clinical journal in oncology today. It's an ever-changing critically important piece of the oncology ecosphere. And it's an organization I'm very proud of. DANIEL F. HAYES: Me too. So with that, I will say to you what I said to you last time, thanks for all you've done for the field. Thanks for all you've done for ASCO, and thanks for all you've done for me personally as well. And appreciate the time you spent with us today ALLEN LICHTER: Dan, it's been a pleasure. [MUSIC PLAYING] DANIEL F. HAYES: Until next time, thank you for listening to this JCO's Cancer Stories-- The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple Podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode. JCO's Cancer Stories: The Art of Oncology podcast is just one of ASCO's many podcasts. You can find all the shows at podcast.asco.org. [MUSIC PLAYING]

Dr. Hayes interviews Dr. Anne Moore on pioneering the field of survivorship. Dr. Daniel F. Hayes is the Stuart B. Padnos Professor of Breast Cancer Research at the University of Michigan Rogel Cancer Center. Dr. Hayes' research interests are in the field of experimental therapeutics and cancer biomarkers, especially in breast cancer. He has served as chair of the SWOG Breast Cancer Translational Medicine Committee, and he was an inaugural member and chaired the American Society of Clinical Oncology (ASCO) Tumor Marker Guidelines Committee. Dr. Hayes served on the ASCO Board of Directors, and served a 3 year term as President of ASCO from 2016-2018. TRANSCRIPT SPEAKER: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. [MUSIC PLAYING] DANIEL F. HAYES: Welcome to JCO's Cancer Stories-- The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org. [MUSIC PLAYING] Today, my guest in this podcast is Dr. Anne Moore. Dr. Moore has been instrumental in the field of breast cancer, especially related to her clinical and educational contributions to our field. Dr. Moore was raised and spent much of her formative years in Peru. She received her undergraduate degree at Smith and her medical degree at Columbia University College of Physicians and Surgeons. She completed a residency in internal medicine, as well as her hematology and medical oncology fellowship at Cornell, where I believe she's basically spent the rest of her professional life now as a professor of clinical medicine, and a director of the Iris Cantor Weill Cornell Breast Cancer Survivorship Program at the Weill Cornell Medical College of Cornell University. Dr. Moore, welcome to our program. ANNE MOORE: Thank you, Dan. DANIEL F. HAYES: I hope I got all that right. I think I did. Very happy to have you. And I consider you a real pioneer in that regard, being a woman physician in the decade and decades when that wasn't very common, and a woman oncologist, when it was almost unheard of, frankly. So I know you've probably got some great stories about your med school class, where I think you were 1 of 10 women in your class or something like that, and in your training. Can you fill us in on what it took for you to become a physician? ANNE MOORE: Well, I must say, I went to all women's college. I went to Smith College. So coming into a class where 10% of the class the women was a big change for me, but a very exciting one. The women, we respected each other. We were respected by our male colleagues. We were well-treated. We were included at Columbia. The faculty were always gracious. We didn't have a sense of being excluded. So it was very-- it was a fabulous place to be and very exciting. DANIEL F. HAYES: Did you feel encouraged to pursue your ambitions? Or were there efforts to pigeonhole you into places that were better for women that you might not have wanted to? For example, I interviewed-- I did interview Clara Bloomfield before she passed away. And she made it clear that the things she wanted to do weren't considered ladylike where she trained, but she did it anyway. Did you run into that? ANNE MOORE: No, we didn't. I remember the head of orthopedics speaking to me about an orthopedic fellowship. Some of my classmates did become pediatricians, which of course, was a typical field for women. But I was interested in hematology/oncology even in medical school. And there was never a sense that that was not an appropriate place for me. DANIEL F. HAYES: Well, that's good to hear. I also know in a chat you and I have before this that you were telling me, by the way, I Googled you. And I found your original New York Times wedding announcement. I won't betray the date, but you had a very nice picture. You looked very young. You told me an interesting story about how much time you got off for your honeymoon. ANNE MOORE: That's right. We got married over a Labor Day weekend so we could get an extra day. And I had to go to my chief resident, whom I called Dr. Steinberg, and request not just a two day weekend, but a three day weekend. There was a lot of thought, but my fellow interns jumped in and covered for me for that great event. DANIEL F. HAYES: Those are different times, that's for sure. So I want to talk a little bit about your career. I know in the early 1990s, you began a multidisciplinary breast clinic at Cornell, which at the time, even in the country, was pretty unusual. I'm going to throw out my mentor, Craig Henderson, had started one in the early 1980s in Boston. But now it seems like everybody has a multidisciplinary clinic for every disease in oncology. What made you think that was a good idea then? ANNE MOORE: Well, it was a very practical idea, but we saw a patient for a new diagnosis of cancer. And at that time, I was already becoming very interested in breast cancer. And the patient would come with her slides, with her mammograms. And I would run to surgical pathology, look at the slides, run over to the radiologist, interrupt them to look at the mammograms, run back downstairs to see the patient. And each specialist that I saw was teaching me so much while I was there, just looking over the microscope or looking at the screens. There's too much running around, number one. We all need to learn from each other. And it would certainly benefit the patients. And the decisions were becoming, at that time, a little more complex. We were beginning to think about adjuvant chemotherapy, adjuvant radiation therapy for the new class of patients that had breast conservation. So it was clear that we had to get together. We realized that we had to speak to each other and it would be much easier if we were all in one room. So we started, in 1991, picking up illustrative cases. And we didn't discuss every case by any means. And we would talk to the radiation therapists, the pathologists, the radiologists ahead of time. They would prepare their sections, and we would all meet. The joy that we had of doing this and the excitement in those first few meetings, it's the first time we had ever had a meeting like that. And everybody was very excited to be there. And we met solidly up until today with those multidisciplinary meetings. They have become much more common. And now the group tries to present every case in some form of a multidisciplinary format. But those early tumor boards were enormously important and exciting for us. DANIEL F. HAYES: And who were we back in-- ANNE MOORE: It was basically the surgeons, of course, played a big role, the medical oncologists, the radiation oncologists, the pathologists, the radiologists. And they were sort of the center of the group. We brought the nurses. We brought-- we didn't have genetic counselors involved at that time. We certainly do now. If we had special issues, we would bring in a specialist to help us, a gynecologist, for instance, or a gynecologic oncologist if we had a case that involved removal of the ovaries or risk of uterine cancer, to talk to us. We had the obstetricians come with our first case of giving chemotherapy during pregnancy back in 1991, 27-year-old woman with an inflammatory breast cancer. We needed to give chemotherapy in the six month pregnancy. We had never done it before. And we had a conference including the obstetricians, again, all together in one room. And then, I had the practice of scheduling a telephone call with the patient who was presented. Because very often, they were my patients. I was the person doing the most with breast cancer. We would have a scheduled telephone call the night of the conference after the conference. And I would review who was at the conference and tell them what the recommendations were. And sometimes, we had two recommendations, one from one group, and one from the other. And I explained that to the patient. And of course, they were thrilled at the idea of all those people sitting there thinking about them. DANIEL F. HAYES: Was the surgeon Mike Osborn? ANNE MOORE: Michael Osborn was later the chief of breast surgery. The original surgeons were really, our private practitioners. Because at that time, most of the surgery was done by private practitioners. And most of the medical oncology, primitive though it was, was also done by private practitioners. I was one of the first to be a full time employee of the hospital doing medical oncology. DANIEL F. HAYES: Wow. In Boston, it was interesting. There was a, I won't call political split, but there was reluctance among some of the surgeons to engage in such an activity because they felt it would take away their autonomy and they didn't need it. And others who wouldn't miss a week, who loved it. Ultimately, everybody joined. But did you run into that as well, people who just didn't want to do this? ANNE MOORE: No. I must say, our surgeons were eager. Because this was the time when the question about breast conservation was coming up from the patients. And these are surgeons who all had trained in the radical mastectomy. And New York City women weren't keeping their work quiet. They were really in there, saying, what do you think about breast conservation? And I must say, the surgeons at our hospital-- wasn't true probably at every hospital-- were willing to listen, but they hadn't had the experience of breast conservation. And that's one reason why they were happy to have the multidisciplinary group discuss that. DANIEL F. HAYES: So you must have been at the same time or just before that, this was started at Memorial as well. And I know that then it became that. Was there a citywide breast cancer group that met routinely? ANNE MOORE: Memorial was later with the multidisciplinary tumor board at their hospital, as were the other hospitals in New York. However, we did meet together starting around 1971 with the New York Metropolitan Breast Cancer Group, which was a multidisciplinary group of the surgeons, oncologists, pathologists, the same group that we were meeting with on a smaller scale. And this was an enormous benefit to the doctors treating breast cancer in New York, that we were able to not only hear our own group, but we could hear the doctors from Memorial, from Mount Sinai, from Columbia, from Albert Einstein, from Montefiore come. And we would meet together. We'd always have a social hour. They like their scotch, these surgeons. They like scotch. So we would buy the scotch. DANIEL F. HAYES: That must have been a real cast of characters. Was that, like, Jerry Urban in those days? ANNE MOORE: It was just after Jerry Urban. It was just after Jerry Urban. DANIEL F. HAYES: After him? Wow. And how about Ezra Greenspan? Would he come to that? ANNE MOORE: Ezra had his own ideas. He was not so interested in this group, but he was just a little bit too early. DANIEL F. HAYES: And could you get Jim Holland to come to that? ANNE MOORE: The answer is Jim Holland was also not someone who felt he needed to hear a lot of opinions about management of cases. But on an individual basis, Jim Holland was very helpful with patients. DANIEL F. HAYES: I would have loved to have been at those meetings. That sounds like a lot of fun. ANNE MOORE: It was great. And we still have them to this day. We meet four times a year with an annual meeting on one Saturday every year. DANIEL F. HAYES: And I know now that the last decade or so, you've really focused on survivorship as well as your breast cancer work. I talked to Patty Ganz as part of this series. And in my opinion, she really began the field of survivorship. She started thinking about it 25 years ago. But you've really been a mover and shaker now, especially, I think, in the New York City area. Can you tell us about the clinic you've started and how that works? ANNE MOORE: Well, the survivorship has always been interesting to me, partly because I started so early giving chemotherapy, for instance. And the patients, many of them, had early stage II or stage I breast cancer. And 10 years has gone by, 20 years, 30 years, some cases, 35 years. And they still come to see us once a year. And I became more and more interested in what was going on with them, as well as obviously, with the new patients and the new treatments. So it's always been an interest on an informal basis. I have followed Patty Ganz wherever she goes. I'm always asking her advice. I go to any lecture that's anywhere near me. DANIEL F. HAYES: And I'm pretty sure she stays as late as she needs to and gives it to you well. I've never seen anybody as gracious as she is. ANNE MOORE: Absolutely. Absolutely. DANIEL F. HAYES: Let me ask you. This is an opinion question on my part. There are three models. One is that we just keep our patients as long as we're alive and they're alive. The second is that we start separate survivorship clinics, probably run by not by us. And the third is we say you've had enough of oncology. Go back to your primary care. And we trained our primary care doctors to be the survivorship. Which of those do you prefer? ANNE MOORE: Oh, I think about it a lot. Our primary care providers or gynecologists, to whom we could refer patients, especially our very early stage patients after, let's say, five years for their follow-up, I think they're very happy to have an oncologist on board. They have questions themselves. They don't have the confidence that they're giving the best follow-up, whereas of course, they are. But they're anxious that they don't know how to do it. So I think if we're going to hand them over-- that is, the patients-- we really have to prepare the gynecologists and primary care providers with what we think is the most helpful way to follow these patients. And I don't, at least in New York, we have not been good about that part. I know other programs are trying hard to educate their primary care providers to take these patients back in. I think it depends a lot on who's available. In New York, we have a lot of oncologists. Some of the oncologists will continue to follow their patients for the rest of their lives. Many of our oncologists are finding that they just don't have enough chairs in their waiting rooms to continue to follow the patients. And they want to hand them over. The patients themselves would like to stay with a breast cancer specialist or a special clinic for breast cancer survivors. And that's the model we've used. And some institutions have made it a nurse practitioner program, which I think, again, in the right situation, is certainly suitable. DANIEL F. HAYES: Yeah, that's what we've done, sort of a hybrid. It depends on the patient, depends on other factors. By the way, I found this is a wonderful problem to have. I was talking to a patient a few years ago. And I was saying, you can just go back with your primary care doctor. You don't need to see me anymore. And she said, no, I want to stay with you. And I said, well, the problem is there are too many of you for me to take care of. As soon as I said, that I thought, no, no, no. That's not a problem because there's too many of you for me to take care of. So we've all come up with it. All right, to move on a little bit, you've already kind of alluded to this. But why oncology, and why and when breast cancer? I will tell you that I read your CV and I saw your first paper was titled "The Development of Neural Control of Elementary Motor Function in Vertebrates." And this, in surgical journal, a far cry from breast cancer. And I know some of your earlier work as a fellow was in hematology and platelet function. So when did you change gears? ANNE MOORE: Well, I did my fellowship in 1973, 1974, finishing in '75. And really, the work in solid tumor for oncology wouldn't have filled up a half day in the clinic. We had 5FU for colon cancer. We didn't treat lung cancer with chemotherapy. Those were two of our top cancers. And breast cancer pretty much was treated by the surgeons. The surgeons had a surgical oncology clinic where they give their 5FU to the breast cancer patients. So they're really, or they did, of course, the oophorectomy followed by adrenalectomy followed by hypothesectomy for the estrogen receptor positive from their patients whom they didn't know whether they were estrogen positive or not. So there wasn't much to do. And so hematology, I really took a hematology fellowship later on called hematology medical oncology. But it was such an early time. What happened there was that all of a sudden, around 1976, I think it was, right after I finished my fellowship, came the reports of adjuvant chemotherapy improving disease-free survival for node positive patients. All of a sudden, these were now healthy women who'd had a mastectomy, most of them. And somebody had to give them the chemotherapy. And my first case was a doctor called me, a surgeon. And he said-- I hadn't really known him. He said, is this Dr. Moore? I said, yes. He said, I got a lady here. She just did her surgery. She wants a lady doctor for therapy. I said, great. I'll do it. So it was my first oncology patient. And she was exactly my age in her 30's. And I gave her the adjuvant chemotherapy, trembling. My hands were trembling when I started doing it. We gave, of course, our own chemotherapy. And she did well and went on to live about 30 years, and did die of metastatic breast cancer. DANIEL F. HAYES: So you mixed up your own chemotherapy and gave it yourself? ANNE MOORE: Oh, sure. Yeah, absolutely. There was nobody else to do it. There were no nurses who specialized in oncology. So we mixed it up. While we sat and talked to the patient, we shook the bottle of chemotherapy on the desk, took a syringe, drew it up, and put on a little butterfly needle and pushed the chemotherapy. DANIEL F. HAYES: I hope there are young people listening to this. ANNE MOORE: No worries, no nothing. DANIEL F. HAYES: I mean, the flip side is I think they're overwhelmed with the vast amount that there is to learn now. As you pointed out, when you started, it was 5FU. On the other hand, I don't think they realized how difficult it was to be an oncologist in those days. You must have been in one of the first rounds of the boards that BJ Kennedy pushed through. ANNE MOORE: The first round of the medical oncology boards, I was. I wasn't in the first class, but I was pretty close to it. DANIEL F. HAYES: Yes. And then you sat on the ABIM for a while, correct? ANNE MOORE: I did. It was 10 years for the ABIM on the hematology board. DANIEL F. HAYES: Oh, really? ANNE MOORE: And then I chaired the hematology board. And by the end of the time I was chairing the hematology board, I really was pretty much just doing breast cancer. Well, I was still doing sickle cell disease, thalassemia, breast cancer, lung cancer. And during those 10 years, slowly drifted just into breast cancer. I just scraped through as chair of the hematology board. DANIEL F. HAYES: That's fascinating. So I'm going to take you way back now. Tell me about why you were in Peru. Were you born in Peru? ANNE MOORE: When I was two years old, my father worked for WR Grace and Company, which was Grace Lines at that time. And they were very active in South America. And he was sent to Lima, Peru. And he went there with four children, came back with five, had a sixth later on. And we just went along, started school there, and then came back to the states. And then I went back right after high school and worked in a medical clinic outside of Lima, and what they call a barriada, which is a poor area where very, very poor people lived. I said, I would love to work in a clinic. I had been a candy striper, that was my experience. So they let me work there. And literally, they would give me syringes. I don't know what was in the syringe and they taught me to give injections to these patients. I had no idea what I was doing. DANIEL F. HAYES: I suspect you did not have malpractice insurance. ANNE MOORE: There was no malpractice insurance involved in these situations. But I sure learned a lot, loved it. DANIEL F. HAYES: And have you been back on medical trips or anything to Peru? ANNE MOORE: Not to Peru, no. I haven't been back to Peru since that time. DANIEL F. HAYES: Wow. That's fascinating. All right, another question that I've been dying to ask you, I'm going to call it an obscure role you've had, which has been the president of the American Clinical and Climatological Association. A very interesting group, to which I frankly belong. But it is the oldest honorific society in America, I believe. Is that true? ANNE MOORE: It was founded in 1884. DANIEL F. HAYES: Can you just give-- I suspect very few people on this call have ever heard of it. Can you give people what's the climatologic about? What's the story on this organization? ANNE MOORE: The American Clinical and Climatologic Society was actually founded in 1884 as a group to study climate. And the reason they were studying climate was they were trying to figure out how to treat tuberculosis. So they figured it had to do with climate. So they studied being near hot springs, being near cold springs, being in a warm climate, being in a dry climate, and gave papers on that subject. It was an all-male group for many, many years. The first women were elected around the 1980s. The wives were invited early on to come to the meetings and to sit in on the lectures, but they had to sit in the back rows of the auditoriums. There was one woman member, and then pretty soon, there were two women members. Then I came along as the next wave of women in the American Clinical and Climatologic. And the group has no longer concentrates on tuberculosis. It's a very diverse group with very different medical interests. The vast majority are internists. We meet and listen to papers. and the papers are from all different fields, which again, for an oncologist who loves going to ASCO and listening just to the breast cancer talks, it's really exciting to hear the latest in kidney disease, the latest heart disease. Perhaps one of the medical doctors who's interested in history of medicine will give us a talk. So it's a very varied group, different from our usual meetings. And everything is published in the transactions, which is on PubMed. And the papers are absolutely first rate. DANIEL F. HAYES: Yeah, I have to say, I've loved going and listening to things I know nothing about. One talk was on the importance of the oak tree in history. Because we built ships out of oak trees, they made all kinds of things, and how that then related to medicine. I'll never forget that. ANNE MOORE: That's right. DANIEL F. HAYES: OK, I want to end up with one other. It's timely, and I understand that when you were a resident, you worked with the now legendary Tony Fauci. How did that happen? ANNE MOORE: Tony was at the National Cancer Institute, the NIH. He had been at Cornell. They invited him back to be chief resident. He came on July 1 and I was his assistant chief resident. So we shared a very small office, as chief resident and my entire house staff just loved Tony. We would do anything for him. He was smart. He was fair. He was hard, hard working. Working next to him was absolutely a joy. It turns out, I didn't know at the time, and I wish I had, his father and mother graduated from the New Utrecht High School in Brooklyn in 1928. They had lived in Bensonhurst. Well, my father graduated in that same class and was class president. So I know he knew the Fauci's, mother and father. And I just wish I had known, because of course, that generation has gone now. But they all were alive at that time. DANIEL F. HAYES: He's been kind of busy lately. I don't know if you've heard, but maybe when this all boils over, you can have dinner with him and ask him that question. ANNE MOORE: A Brooklyn reunion, absolutely. But we loved him as a resident, as you can imagine. DANIEL F. HAYES: So I want to finish with the work you've actually done for ASCO. You are a fellow of ASCO. And I'm sure you're proud of that. You should be. And you've had a lot to do with the self-evaluation program. And I know you've been a mentor for the IDEA program. You were one of the lead of the leadership development program. And now you're on the board for the Conquer Cancer Foundation. And would you just give a few-- this is a little self-serving because I'm one of the foundation's greatest supporters. The stuff they do is amazing. But tell us a little bit about the Woman Who Conquer Cancer that Sandy Swain has started. ANNE MOORE: Women Who Conquer Cancer is a very focused initiative from the Conquer Cancer Foundation, started by Sandy Swain, to try to support with young investigator awards, with career awards, specifically, women. And I think it's so important. The ones I think are the most important are the young investigator awards for women who are coming out of their fellowship. Maybe they're married. Maybe they have a baby at home. They've got their hands full. And to have somebody recognize their work and say, we're going to support you, I think, is fabulous. I think that's a very hard time for women. They can begin to flounder right at that moment. And there's the Women Who Conquer Cancer awards to be able to focus on them. DANIEL F. HAYES: It is their most vulnerable time. And it's actually not a lot of money, but it keeps them alive. And all they got to do is get one paper with their name on it, and we got-- and they're hooked. And I've had two or three now who've had them. And they're wonderful awards. So for those of you who are listening, sit down and write a check to the foundation. ANNE MOORE: That's right. Absolutely. DANIEL F. HAYES: I'm shameless. Well, that's about all. We've run out of time now, unless there's any other great anecdotes or anything you'd like to share with us with your career. ANNE MOORE: No, just how important ASCO is, and very central to my career. And I hope anybody who's listening appreciates ASCO and the opportunities to serve on many, many, many of the committees and facets of ASCO. DANIEL F. HAYES: It's a lot of fun. Thank you for the shout-out. Well, thanks for taking your time to speak with me today. You've been very important to our field in general and to especially women in New York City with breast cancer. I don't know anybody who doesn't know of and respect Anne Moore if they live somewhere in the New York City area, let alone the rest of the world. So thanks for your time. I very much appreciate it and look forward to seeing you in person when this COVID thing goes away. ANNE MOORE: Thank you, Dan. And thank you for doing this series. [MUSIC PLAYING] DANIEL F. HAYES: Until next time, thank you for listening to this JCO's Cancer Stories-- The Art of Oncology podcast. If you enjoy what you heard today, don't forget to give us a rating or review on Apple Podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode. JCO's Cancer Stories-- The Art of Oncology podcast is just one of ASCO's many podcasts. You can find all the shows and podcast.asco.org. [MUSIC PLAYING]

An assistant professor reflects on racism in the hospital workplace. TRANSCRIPT [MUSIC PLAYING] LIDIA SCHAPIRA: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Welcome to JCO's Cancer Stories-- the Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org. MARJORY CHARLOT: Recently, I was caught off guard when my white elderly patient, lying in his hospital bed with his daughter and wife at his bedside, asked me to hold my hands up against his because Blacks have longer fingers. I am a medical oncologist and an attending physician, supervising a team of two medical interns, a medicine and a pharmacy resident and a medical student. This incident occurred during our routine morning rounds on the inpatient oncology service. The silence in the patient's room was palpable. My emotions in that moment spun in all directions from the shock of this patient's unexpected derogatory and racially charged statement. I was angry, upset, humiliated, and embarrassed all at the same time. The stereotypical and discriminatory generalization that Blacks have longer fingers and his request for me to hold my hands up to his was demeaning. His focus on my skin color and physical features, as opposed to my medical knowledge and expertise, was revolting and an insult to my identity as a physician. To get on with the task at hand of reviewing the patient's overall status, I decided to ignore his comment, gently held his hand, and addressed the remaining questions his family had regarding his condition and hospital course. As I walked out of the room, I felt compelled to immediately debrief with my team, but I soon realized that I had no idea on how I was going to do this. Some might have advised me to brush off this experience and pretend it didn't occur. Others might have pointed out that this patient was elderly, likely had hospital-associated delirium, and may be unaware of the meaning behind his comments. In the moment, however, I felt two things to be true. First, this was an explicit example of interpersonal racism during a patient-physician interaction. Second, despite the patient's action, I needed to uphold the oath I took almost 15 years ago to provide my patient with the best care possible while forgoing the personal attack on the essence of who I am as an individual and physician. The collision of my identity as a Black woman, physician of color, academic physician leading a team of trainees, and a doctor who feels an obligation to provide good care to every patient, regardless of the circumstances, contributed to how conflicted and uncertain I felt in the immediate moment. The culmination of my four years of medical school, three years of internal medicine residency, three years of hematology-oncology fellowship, and nine years as a staff medical oncologist did not protect me from being viewed through a racial lens. I knew that I could not go on about business as usual and was unsure how best to respond in that moment. I quickly said to the team that what the patient said was inappropriate and racist. Following this, my intern sincerely apologized. I told her there was no need for her to apologize because she was not at fault, and sadly enough, this was the extent of my debriefing. My husband, who is white and a fellow physician, was mortified when I discussed the incident with him that evening. As I was processing this incident during our conversation and then sharing this experience via a group text message with a close network of friends from residency, who for the most part identify as female physicians of color, I came to the realization that I needed to debrief further with my team. I cannot not let this teachable moment pass without the recognition it clearly deserved. Explicit discrimination in the workplace from patients is not uncommon for physicians of color, physicians with an accent, physicians who wear traditional clothing or head covering, or physicians with a name that is unfamiliar or perceived as difficult to pronounce. The collision of the multiple identities that I embody as a Black female academic physician is likely experienced by others underrepresented in medicine. In the midst of this encounter with my patient and as an academic, I wondered if there were best practices to guide a response to interpersonal racism during a medical encounter. I also wondered what protections are in place within the hospital for physicians experiencing racism from their patients. I learned that our hospital does have a policy on nondiscrimination against providers and staff, that these violations should be reported to the attending physician or nurse leadership, and that it is the attending physician's or nurse leadership team's responsibility to discuss this issue with the patient. There are also resources and a script available online to guide discussions when a patient requests to change providers on the basis of the patient's discriminatory views. However, as an attending physician experiencing racial discrimination from a patient who is not requesting a change in provider, I felt the immediate responsibility to address this but did not have much guidance. The morning following this incident, instead of the planned teaching on the management of malignancy-associated hypercalcemia, I opted to discuss racial discrimination against medical providers. Without access to evidence-based guidance at my fingertips for the questions I was contemplating, I used what I experienced to generate this discussion. Unlike my usual didactic lessons that are well prepared in advance, engaging, and presented with confidence, I approached this discussion with my raw emotion and feared that my words would fumble. I also feared that my trainees would be uninterested or uncomfortable with openly discussing race and racism. However, I was pleasantly surprised by my trainees' reaction and their level of comfort in engaging in this discussion. A few of my trainees shared their personal experience witnessing racism outside the workplace while others attentively listened and were perhaps not ready to share their thoughts or feelings in that moment. Leading this discussion was a moment of vulnerability, but it was also empowering to accept the discomfort in creating this necessary dialogue. After our team discussion, my intern explained that her apology after the incident was because she felt sorry I had to go through this experience and that she was not apologizing for the patient. I was encouraged by her acknowledgment and her apology, which left me with a sense of optimism about the next generation of physicians and their willingness to recognize inappropriate and unjust interactions during the medical encounter experienced by physicians underrepresented in medicine. But is this enough? As I reflect on how my team of trainees, from their position of privilege, could have further responded as an ally, I recognize the need to provide trainees and colleagues with communication tools and skills to feel empowered to respond against discrimination during medical encounters. Calling out the inappropriate behavior, generating a response aligned with human decency and fairness, and creating opportunities for open discussions with trainees can be a start in addressing the gap in best practices in guidelines on confronting discrimination as physicians in the hospital workplace. As an attending physician, I acknowledge that I am in a position of power, and most often, patients are in a vulnerable state and at the mercy of their providers. In this particular encounter with my patient, I don't believe directly addressing his discriminatory comment with him would have made a difference in his care or his outcome. Dismissing this encounter altogether could, however, have had a lasting impression and influence on how my team of trainees approached discrimination during other medical encounters. Trainees of color, as well as white trainees, need teaching on how to debrief and diffuse similar incidents. Our collective responsibility as physician leaders is not only to supervise and educate our trainees about the art and science of medicine as it pertains to managing medical conditions but is also to model humility and to teach them how to recognize bias and discrimination, feel safe to openly discuss discrimination of any kind, and most importantly, to teach them how to nurture and support their peers and colleagues facing discrimination. Even when we are not comfortable and without formal training in dealing with patient-directed racial discrimination during the medical encounter, it is important for us as physicians to have these meaningful conversations outside of our comfort zone with our colleagues and our trainees. Admitting vulnerability as a seasoned physician is difficult, but we should feel compelled to lead these conversations to cultivate a medical community that stands together against all social injustices. In retrospect, I am confident that this experience will continue to have a lasting impact on my trainees, and it served as my initiation to the professional responsibility I feel to create dialogue with my colleagues and trainees. I am optimistic that sharing this experience will empower other trainees to advocate for diversity, equity, and inclusively as they, too, become leaders in the hospital workplace. In holding my patient's hands as a sign of my commitment to providing him with the best care possible, I felt empowered. Similarly, I will also hold the hands of my trainees, committing to lead them during these racially charged and divisive times, so that we can stand together against racism and injustices of all kind. [MUSIC PLAYING] LIDIA SCHAPIRA: Cancer Stories-- the Art of Oncology. With me today is Dr. Marjory Charlot, who is an assistant professor at UNC in the Department of Medicine and the Division of Oncology. Welcome, Marjory, to our program. MARJORY CHARLOT: Thank you. Thank you very much for inviting me. LIDIA SCHAPIRA: It's a pleasure to have you, and thank you so much for submitting and for writing this essay about such a difficult topic. The first question I have for you is this. Was it hard to write the essay? MARJORY CHARLOT: It was quite difficult for me. I remember after the episode happening, just kind of when I got home, I was like, let me just jot down what I'm feeling in the moment. And I just sort of just threw some words onto paper. And it's actually interesting for me because it's not a process that I've ever gone through in terms of experiencing something either in the clinic or in the hospital and then feeling this need to go ahead and write. But what I wanted to do-- and this was certainly not the actual essay, but it was just a way for me to express what I was experiencing, pen and paper and just kind of leaving it there and having that space to kind of have this conversation with my husband and close friends, was pretty much the process that I went through. And then really, I didn't go back to that experience for several months, and so then I went back and said, oh, these are the things that I was experiencing at the time. And so it was interesting. I think with sort of the resurgence of everything that's been going on in the country around the injustices among the Black population in particular, I think that really drove me to sort of go back to this essay and to really think about the things that I experienced and figure out a way-- how do I share this information not only with the trainees who are involved with this particular episode but really with everyone, colleagues, people in oncology? Just because I just felt the need to give back and really felt the need-- how do we respond as a profession? And so that was kind of my process in terms of writing this. LIDIA SCHAPIRA: So that's fascinating, so writing both as a means to process a difficult experience, taking the time to really let the experience sift through all the levels, and then crafting a beautiful essay that also serves as a message and a call to action in many ways for your colleagues. Let me ask you another question that came up as I was reading it. You talk about the collision of multiple identities that you embody as a Black female physician, and I wondered if you could unpack that sentence a little bit for me and perhaps for other listeners of the podcast and readers. How did you come about thinking about all of these multiple threads that together define your identity? And how do you think about this? MARJORY CHARLOT: Sure, sure, so in terms of thinking about who I am on a day-to-day basis, the first and foremost, I think, when people see me or meet me, it's pretty apparent that I'm a Black woman. And so that's one part of my identity that for lack of a better word is quite obvious. You see me in person. And I think that plus my identity as a physician, as a teacher-- and it's quite interesting because I think about these things particularly when I am interacting with patients. When I have a patient that happens to be Black, I think that there is this sense of familiarity, a level of comfort that I-- and this is just from years of experience that I've just noticed, that when I walk into the room, it's sort of that unexpected or this recognition like, well, we've got something in common, even though it may just be on the basis of gender. Or it may be on the basis of race and gender. So I think that that piece of it is very central in terms of how I interface and interact with my patients, and so that's part of that multiple-identity piece that I write about in this essay. I think there's also this part of being a physician as well as being an oncologist. I think that there's something very different in terms of being a provider that specialized in one particular area, and so I think that also speaks to who I am. And then I think lastly for me, being an academic, so being in an environment where the expectation is not only to care for patients but also to be a teacher and a role model-- and so it was thinking about all of these different roles that I play in any particular interaction with patients or in the work environment sort of plays into this multiple identity issue that I briefly discussed in the essay. LIDIA SCHAPIRA: So let's talk a little bit about that. The number I hold in my head-- and please correct me if I'm wrong-- is that perhaps 1% of all oncologists or less or fewer are Black women. And the other piece about this is all of the isms that we can attach, the sexism, the racism, all the other isms that really provide such a hurdle for us or are such a hurdle in thinking about how we can be our best selves and perform at our best as academics as oncologists. I wonder if you can reflect a little bit on that. How did all of these different aspects that shape your identity guide your decision to stay in academia, and how do you think that your identity influences the kind of academic that you are and aspire to be? MARJORY CHARLOT: That's a great question, and so, I mean, I'll tell you a little bit about me. So I grew up in Boston in a neighborhood that was predominantly Black. I'm a first-generation American. My parents originally came from Haiti. And so what influenced me, first of all, to even become a doctor was having a Haitian pediatrician, who at that time actually did house calls. And so this pediatrician was so integral to the community. He was a community member, and so that really influenced the type of physician I wanted to be. I wanted to be someone that could relate to the community of patients that I was taking care of. And then having gone through all of the medical school and training that I've been through, it wasn't until, I would say, during my residency in Boston-- I did residency in the hospital that I was born in, and so I could relate with my patients from saying, oh, I know that street, or I know this restaurant or this shop or this organizer in this particular community. And so for me, that connection really influenced my decision to stay in academics because having gone for residency and fellowship, connecting with students, connecting with mentors, I felt like that was a community in and of itself. And so for me, I wanted the opportunity to really influence trainees, trainees that look like me, trainees that don't look like me, trainees who want to learn about oncology, learn about community, learn about underserved patients, because that's who I feel I represent in terms of the environment that I grew up in. And so that really influenced my decision to stay in academics, because I wanted to be a part of really having an influence on the next generation of trainees to ensure that all voices really are represented in this field. And so that, for me, as a Black woman from an urban area that was not necessarily affluent-- but I wanted to be able to speak to that experience and to be a voice for other students coming up who live that experience. LIDIA SCHAPIRA: Let's talk about where you are now. In the essay, "power" and "empowered" appears multiple times. As an assistant professor and team leader, you are now both in charge and confronted with this episode of racism. What do you do? You read the protocol for the hospital, and it basically says, you are the person with the most power. How did that feel for you, and what did you do with that power? MARJORY CHARLOT: That's a great question as well. I think initially, when I was trying to figure out, OK, well, what do you do when this happens to you? Just because I wasn't clear exactly, what is the responsibility that I have as a provider, as this patient's attending of record in terms of going through this experience? And so at the time, I can tell you, it was not a powerful moment during this interpersonal racism event. But it wasn't until after in terms of walking out of the room and knowing that I needed to address this and I needed to figure out, what exactly do I come away with with this experience? And what exactly do my trainees, who are in the room, come away with this experience? And I acknowledge the fact, yes, I am the attending of record. I lead the team, that I am in a position of power, and this patient is a patient. And like most patients, I think it is a vulnerable moment to be in the hospital. And so understanding the power dynamics as a physician and a patient-- I think that was one of the thoughts that came into my mind initially and then also this feeling of, I need to do something about this. I can't let this go. I also stressed the importance of being an academic physician. My role, I feel, on the wards is primarily to teach. I feel like the interns, the residents, the pharmacy medical students, the students are there to learn. The interns-- they're the doctor. They're doctoring. They're providing care, and my role is really to advise, supervise, and to teach. And so I felt that given that I have the luxury in academics to not only care for patients but to also teach my trainees, I felt like that was the power that I was really focusing on and really trying to harness as I went through this experience and wanted to really guide my team at the time. LIDIA SCHAPIRA: Let's talk a little about that. You say very specifically in your essay, which is part of the message, that you realized that it was a teachable moment and that part of the role of an academic physician is to teach communication skills so that other members of the team could respond to situations like the one you describe here. I love that thought, that by giving these skills and tools, the team could respond to the situation if another situation like this was enacted. Tell us a little about what those communication skills are and how others should be teaching those to their students and mentees. MARJORY CHARLOT: Right, and so I think with regards to the communication skills, one of the first things that I thought was important was really to give the trainees the space to speak because I feel oftentimes-- and this is in my experience, talking about race and racism while on the wards. That's not something that you just generally do. It's not really part of the curriculum. It's not part of the evaluation form, so it's not something that organically happens. And so for me, I thought that having that space for my trainees to really just discuss what just happened, what were their thoughts, how are they feeling, and really getting a pulse to what is kind of already happening either within their training programs-- since I have a team of both pharmacy and medical students as well as internal medicine residents on the ward, it was really an opportunity for me to get a better understanding on what exactly do they talk about in their training. Do they even discuss race and racism during their training? So I thought that that was the initial piece of this communication skill, that that's necessary, is really just being able to listen. So I think a lot of times, we think about, oh, we need to teach people this is what you say. Here's the script that you use. But I think really offering that space is part of that communication. That space to talk, that space to listen, I think, is number one. Number two, I think, also stressing the importance that it's not so much my role, either as a physician leader or either as the person who's confronting this issue of racism or really any of the isms-- it's not my specific role to necessarily respond especially in the moment where a lot of this is very fresh, and you can be very stunned and shocked. And it's really difficult to even talk or to speak, to say anything. And so thinking about those around us and what their roles are as allies-- and reason why I bring this up is because I think that perhaps-- and I can't make this assumption because probably for some allies, as I could see, at least in the room when I went through this experience, that it was just complete silence. So I felt that maybe everyone else in the room was also experiencing this shock and felt stunned and didn't really know what to say, and I think that that's OK. But I think what's not OK is to just completely ignore it. And so with communication skills, I think it's really important to-- even if this is not an area that the individual may feel comfortable in discussing, that it's important to just say, OK, let's take a step back. What just happened in the room was not OK. And for me, that was a process that I went through where I was like, OK, it's not OK. It's ignorant. It's racist, and it's not right, and kind of left it at that. But I think going back, whatever that time and space may be, going back and saying, OK, team, what just happened was not OK. What were your thoughts? What were you feeling? How do we as a team process this? And again, I don't really have the necessary answers in terms of the best ways to do that, but I do know that listening, calling these inappropriate actions out, and having that discussion-- I think that's the beginning of developing these skills on how best we can communicate with each other as a team. And then I think the other piece-- if appropriate, going back and communicating that with the patient as well. I don't really get into that that much in this paper, this essay, but I think that's certainly a skill when it's appropriate. And I think that there may be different nuances within all of these interactions where the appropriateness of going back to a patient really is going to be determined, I think, by the individual or the team members that are affected by it. LIDIA SCHAPIRA: It's worth repeating that communication skills training is often about accepting and understanding the emotional load of the work. In this particular case, as you say, a lot of it has to do with being confronted with what is unjust. Listeners will perhaps have other associations and memories of a time when they have been faced with this, and to add to the challenge you describe here is that you are the top doctor for this patient, making it an almost unbearable situation. I thank you for describing this to the readers to help us all feel your anguish and identify opportunities to respond in such a situation. Your essay provides a very important contribution to our professional literature. So my last question is this. I'm sure you've thought about it, and you hint at this at the essay. But if there is a next time-- and there probably will be-- can you imagine how you will react? MARJORY CHARLOT: Right, that's a very interesting question in that it's so hard to predict only because-- and the reason why I say this, too, it's only because these moments-- they catch you by surprise. And then there are times where you're not necessarily surprised in terms of my experience, again, as a Black female physician in that there are times where I come in, and I'm like, oh, I know what I'm walking into. I'm guarded. With what I described in the essay, it was shocking to me just because this was a patient that I had an established relationship with throughout the hospitalization, and that comment just came out of left field. It wasn't an initial interaction with the patient. But I feel that if that's the first thing that's coming at me when I first meet a patient, I feel that that's a lot more comfortable to address head on. But I think if you already have this established relationship and then all of a sudden, you hear this type of comment, I think it makes it quite difficult. So it depends on what that next time is like in terms of where I am in that day. How many microaggressions have I gone through that day? So I think all of those pieces really influence my response. And so it's really difficult to say exactly-- OK, I wrote this essay. I've processed. Now I know I'm prepared for the next time. I wish it were that simple, but unfortunately, it all depends on what's happened that day, that week, that month, where we are in the country with regards to different social injustices. So unfortunately, it's one of those things that I can't predict how I would respond. LIDIA SCHAPIRA: It's refreshing to hear you say that. Of course, it's impossible to know. Thank you for sharing and taking the time to write about it and sending it, so our thoughtful community of oncologists can think about how they can also be allies in addressing racism in the clinic, in the office, or in the hospital. MARJORY CHARLOT: Thank you so much, Dr. Schapira. It's really a pleasure to have this opportunity to share my story and to lift my voice in this area. So thank you again, and thank you to the Journal for accepting this essay. [MUSIC PLAYING] LIDIA SCHAPIRA: Until next time, thank you for listening to this JCO's Cancer Stories-- The Art of Oncology podcast. 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