Cancer Stories: The Art of Oncology

A doctor is moved by a speech given by a past patient’s son.

Read the related article The Boy I Never Knew by Richard M. Boulay on JCO.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. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. "The Boy I Never Knew." At the invitation of a former patient, Vivian, and her 15-year-old son, Joshua, I attended my first patient-sponsored medical conference. The clinking of coffee cups quieted as Joshua began the first lecture of the day. He took the podium with poise and addressed the assembled 300 cancer survivors, physicians, and researchers. It all began when my parents were not able to get pregnant for years. Finally, they decided to see a fertility specialist. But an unknown mass was found. Surprised and shocked, they waited a month to see if the tumor would go away on its own. It didn't, and surgery was recommended immediately. To make matters worse, they required my mom to take a pregnancy test before surgery. She was pretty angry about that one. Years of not being able to get pregnant, and they wanted to confirm that one more time. Yep, mass confusion. The words, you're pregnant, came next. My mom was informed that the baby would have to be aborted so surgery could occur to remove the mass. The only other option was to wait until four months gestation. I didn't even know what the word "gestation" was until a few weeks ago. Although this narrative was familiar to me, the youthful narrator was not. Joshua's words immediately catapulted me back to 2002, a time when he was little more than a zygote. His mom, Vivian, was simultaneously diagnosed with an ovarian mass and a pregnancy by her local obstetrician. Although he recommended termination of the pregnancy and immediate surgery, she delayed treatment for two months because of her strong desire for pregnancy and her low risk of ovarian cancer. At 16 weeks gestation, the pregnancy had progressed as expected. Unfortunately, the mass also grew. Vivian, now consenting to surgery, negotiated the goals of the procedure with her obstetrician. Remove only the affected ovary while maintaining the pregnancy. Perform no surgical staging that may risk the developing fetus. The procedure went according to plan. However, Vivian was diagnosed with a ruptured and unstaged clear cell carcinoma of the ovary. It was then that I first met Vivian, who, quite frankly, rocked my world. Early in my career, I squirmed as she pushed the boundaries of medical standards of care, elevated the role of patient autonomy, and confronted long-held beliefs that acuity and timeliness of cancer care trumped all else. Yet her decisions then led directly to this moment. Had she succumbed to conventional wisdom, I might never have known Joshua's eloquence. As her gynecologic oncologist, at our first consultation, I discussed the changing conventional guidelines and the difficulties of maintaining a healthy pregnancy while treating ovarian cancer. Although terminating the pregnancy was still an option, it was no longer required. I recommended a modified surgical staging to identify microscopic metastases. Chemotherapy should follow. We could make attempts to preserve the fetus. But they would come secondary to the needs of the mother. My dispassionate assessment ran headlong into Vivian's fresh perspective of a mom to be, balancing treatment-related risks for both herself and her unborn child. My data-driven treatment plan, bolstered by years of conventional wisdom, presumed that dead women gestated poorly. Yet it crumbled at Vivian's insistence of advocating for the dyad. So I reviewed the sparse data sets informing the conventional wisdom. I telephoned experts, whose opinions were softened compared with the rigid language of my texts. Even though I was less assured, I still recommended a modified surgical staging. Chemotherapy could then be given. But long-term effects of fetal taxane exposure were unknown. Alternatively, delaying surgery and chemotherapy until a planned early delivery was a possibility, although a very real risk of progression existed. Vivian unhesitatingly and wholeheartedly took on the risks of a delayed treatment. More importantly for me as her physician, she took these risks knowingly. She fully understood her decision may result in death. But for her, the decision was about preserving life. Again we waited. The pregnancy progressed normally. Magnetic resonance imaging and tumor markers revealed no cancer. And while getting ready for a New Year's Eve party, I received a call regarding Vivian's onset of labor at 34 weeks. Childbirth is, among other things, inconvenient. The obstetrical team delivered the neonate. I performed the modified stay during surgery. A stay in the Neonatal Intensive Care Unit, NICU, for the newborn and chemotherapy for the mother followed. Mother and son both suffered but, clinging to one another, survived, recovered, and ultimately thrived. Joshua continued. Surgery occurred at four months. The fetus survived. The mass exploded upon removal. My mom was diagnosed with clear cell epithelial ovarian cancer at the age of 30, and she was pregnant with me. Treatment was required. She opted to wait until after delivery. So I was five weeks early. But I got out just in time to be a tax break. I guess that was the first gift I gave to my mom. On New Year's Eve 2002, I decided to make my entrance-- again, not planned, but why start now? Nothing about me was planned. My mom underwent more surgery in staging that night. I, too, was a bit problematic, with lung deficits. Needless to say, my mom and I had an extended stay in the hospital. My mom began treatment when I was able to behave, breathe on my own. Once I was released from the NICU after almost a month, I stayed by her side during multiple rounds of chemotherapy. I hear I was the life of the party in there. What a beautiful place to end a story-- a grateful mom, a happy baby, and a relieved physician. But 15 years later, a boy approaches a podium with a PS, adding a facet to this story that I had never previously considered. This positive "pregnancy test cum zygote cum fetus cum neonate cum baby" became Joshua. And until now, he had existed in my mind as no more than a decision point in an algorithm, as one of two rapidly growing cellular masses within his mother's true pelvis, one desired and the other not, competing for space and blood supply. His mere presence so confounded my cancer treatment plan that I discussed trading his existence for a better chance of preserving hers. After all, Vivian was the patient. But with some literature available to support her decision to maintain her pregnancy, I was comfortable proceeding with the pregnancy in situ. However, when she rejected the recommended surgery and chemotherapy, opting to wait until delivery, I felt adrift in doubt, fearing the consequences of inaction. It was not until this moment that the impact of Vivian's decisions made 15 years ago began to settle upon me then threw me, gently at first like a whisper, which in time demanded to be heard. My decision tree, scientific and statistical, balancing risks and benefits for Vivian, suddenly became both equally burdened and enlightened by the young man addressing this crowd. I had never until this day considered his thoughts and opinions on the life his mother so selflessly gave him. In fact, I had never considered his life at all. At that time to me, Joshua was a fetus, a potential life. Today, he stands before me, powerfully realizing the beginning of that potential. Joshua closed. Here's what I do remember. Through probably some of life's most difficult moments, our bond never broke. Don't get me wrong. I test her at times. I mean, I am 15. But I am the person I am today because of her. While she has taught me many lessons, I want to close with three I ask you to remember. One, never say, I can't. Do you know what happens when you say, I can't, in my house? It isn't pretty. It's worse than the cancer card. It's the scar. Yep, shirt up, scar exposed. The words, did I ever say I can't have a baby in cancer, pour from her mouth. Everyone in my house knows. They can, or they will die trying. Never say, I can't. Two, include us. We already know when something is wrong. You are not protecting us by your silence. Talk to us. Tell us your fears. And let us know how we can help. There are some days I wish my mom wasn't so honest. But in the end, not knowing would be so much worse. While difficult and at times a bit traumatizing, I wouldn't have preferred it any differently. It has helped create and shape the person I am today. Three, connect. Connection is key, my mom tells me. I tell her not to worry. I am well connected. Feel free to add me on Snapchat or Instagram. I have experienced it firsthand. The more awareness, the more lives saved. The more lives saved, the more moms that are able to raise us. It is now my honor to introduce to you my mom. Joshua looked up as his last words faded into a standing ovation. And though he spoke to the collective experience of the hundreds present, I couldn't help but sense a personal connection to the boy I never knew, a boy whose confident, assured narrative contrasted with my own recollections of the indecisiveness and doubt, a boy whose mother's desired treatment plan, although it was different from prevailing medical wisdom, proved equally legitimate. The son of patient autonomy addressed me today. The youth born of selflessness challenged me today. The young man embodying a mother's courage moved me today. [MUSIC PLAYING] I'm Lidia Schapira, editorial consultant for the Journal of Clinical Oncology's Art of Oncology. I would like to welcome you to Cancer Stories. I'm the host of this podcast. And with me today is Dr. Rich Boulay, director of cancer survivorship at St. Luke's University Health Network in Bethlehem, Pennsylvania. Dr. Boulay is the author of "The Boy I Never Knew," published in the January issue of JCO. Rich, welcome to our program. Thank you, Lidia, for having me. I'm looking forward to this talk. Oh, so am I. I know you've contributed to Art of Oncology several times. So before I ask why you write, let me ask you, what do you read? What is on your night table right now? I actually just picked up The Bright Hour, which is a cancer narrative of a young woman who is actually succumbing to her disease. And I find cancer narratives incredibly powerful. When Breath Becomes Air is probably one of my favorites that I've ever read of all genres. So I tend to read a lot of those. And when they're not on my nightstand, they're on my phone. So I tend to look a lot through Twitter and find patient narratives because I find them incredibly powerful and transforming pieces of literature. And in what way would you say they are powerful or helpful to you? Do they help you process your experiences? Do they expand the way you think about it? You're so clever with words. I'm sure you can help put this into, perhaps, a sentence that people can understand. What I find powerful about them is that they are unique, personal, and they each have a different facet and a different way of understanding communally what we think of as cancer survivorship. So it's not so much adding to the breadth. It's adding to the depth of that experience. And when someone has been through something personally, speaking to that in a beautiful way-- for instance, Susan Gubar's Living With Cancer blog in The New York Times is a beautiful example of an intricate and exacting narrative using beautiful language and discussing very common experiences that cancer patients and survivors have in a very, very beautiful way. So that's what they mean to me. You have written that this is deeply personal and that you accompanied your wife through a cancer diagnosis. Can you share with us a little bit about that in terms of your professional life and your motivation to share these stories? Yeah. I think that's where the idea came that the expert, in my mind, is the patient. So we are trained to be the experts. We are trained to know the literature and to know the next medical step in treating someone's diagnosis and in treating their person as well. Until you are right there in the swirl of the storm, though, it is a completely different beast. And I will tell you what I relied on when my work was initially diagnosed with leukemia, which is about 10 years ago-- and she's still doing fine-- was my patients. Their day-to-day information on how to cope with the myriad of experiences that come up-- you know, what do you say to someone who says something totally off the wall and dumb? When they start telling that story and it ends with, oh yeah, and that person died of the same disease you have, how do you manage those daily insults? And how do you get the information across? And how do you get food for your kids to eat? It's just that daily processing of a new cancer diagnosis and how it touches everything. I always say they were my saviors. And they got me and my family through all of this. And it was completely different as an experience from what I learned through my fellowship and my residency and my textbooks and my readings. I learned how to treat a disease. I really didn't know how to treat a person because I didn't understand what they were going through. And again, this is second hand. I wasn't even the one with the diagnosis. So that experience has really transformed me and really want me-- it's really pushed me in places where I never expected to go. In telling these stories as clinicians, we are in the center of powerful, powerful experiences where we can learn from them that challenge our own selves and our own values. And this story did for me. And then to be in a place where people may want to hear that is really fascinating. And being able to have that experience of learning and thoughtfully processing and then being able to pass that along is really valuable. And I wish more physicians would write or speak and share these experiences in ways that people can benefit from them because we have a wealth of other experiences besides simply clinical research or bench research and publishing that and speaking to each other. Just having the privilege of being in someone's life as they go through the most difficult days and what we learn and take home from that is very powerful and very valuable. So I wish that would be shared more from our point of view. Thank you for that wonderful reflection. That was so deep. When I look at your work, the essays you've published over the years, the theme that emerges for me is that of connection and the importance of connection-- connection for support, connection to personal growth, and perhaps even listening to you now, how that really helps us develop our empathy for our patients and our compassion. Can you speak to that a little bit and how you have dealt with that in your essays? Yeah, that's actually a beautiful understanding of me. And we've only met in the hallway at ASCO a couple of times. But you are absolutely right. For me, that goes way back. So as a kid, my first experience with cancer was that of my grandmother's. She was diagnosed with a colon cancer. She was diagnosed with late-stage disease. But surprisingly, she lived another five years. And that was back in the '80s, before we had a number of the drugs that are available now, as well as a number of the drugs to combat the toxicities. So although she lived, her quality of life wasn't great. But what I felt at that time was a great conspiracy of silence and that as a grandchild deeply in love with his grandmother-- I mean, she was just the-- we just had an incredible connection. But not being able to understand or process or even have the language to think about her disease and how it affected those of us around her was more bewildering than anything. So it kind of left-- we all go through difficult parts in our life. And we all try to grow from them. But I didn't feel that there was much growth. I felt like my grandma got sick, and I lost her. When I became a clinician, the same conspiracy of silence existed. And we've all seen it. We'll have the family member who asks us to speak out in the hall because they don't want to speak in front of the patient and ruin this tactful little lie that may be going on where people are hiding truths from each other. We don't have the right language. We don't share honestly the experiences. We try to either prop them up and make them either more joyful or more sorrowful. We just don't have a way of honest transmission of knowledge between each other. So for me, that personal connection is what is going to further our understanding of how people process this disease and how people learn to live with it. We've done great at improving-- as physicians, we have the language for this. But the improvement of death of 27% over the past 25 years or so is wonderful. But we need to start talking about how to improve life, too. And I think having open, honest dialogues and connections with those that go through this is the only way to do that. And encouraging patients to speak their truths. And encouraging patients and their families to speak the same language. And trying to give them the right words to use, even to help to convey some of the parts of the experience that they just don't know how to speak about. So yeah, it's, for me, all about that relationship. And that's why I do what I do. The privilege to take care of patients in their most difficult hours and be some sort of support, both medically and socially, I hope, is incredible. And what I get from that is everything that they think I give them, I get twice as much. It's just an incredibly powerful learning and therapeutic relationship. And I wouldn't trade it for anything. So I hear your incredible enthusiasm and passion. And you are in such a great place to develop programs for cancer survivors because I think you completely get their point of view and value their perspective. And you've walked in their shoes. Let me ask you a little bit. As a surgeon, since you're trained in gynecologic oncology, you also have this incredible opportunity to form relationships with patients and see them through the entire illness. Tell us a little bit about Vivian and Joshua. Vivian is the protagonist of the story you just wrote, "The Boy I Never Knew," and Joshua. And you write about this very moving meeting with her son 15 years after you took care of Vivian in crisis, really. So in the remaining minutes, can you tell us a little bit about the essay and what drove you to write it and the message you want to make sure your readers take from this essay? Yeah. Well, first of all, I want to thank you for helping edit it because this was a challenging one for me to write. I wrote from two separate points of view within the same narrative. And it tended to get a little boxy and confusing. So thank you and your editorial staff for helping me through that quagmire at times. I just reread it today, and it says exactly what I wanted it to say. But the first time, it didn't. So thanks. This was a true chance for reflection in a way that I had never expected. So it totally caught me off guard, was the first thing. So I get invited to a patient-sponsored conference. So there are docs and patients. But it's primarily-- it's not a medical conference, although it is a medical conference. But its focus is on patients. And the very first speaker of the day is this young boy who I'll call Joshua. He is 15. And he is telling his mother's story. And his mother, Vivian, was a patient of mine while she was pregnant with him. And the story reflects back and forth between his point of view and my point of view. And the three points that I wanted to get from those two narratives back and forth is-- the first one is that as physicians, our medical decision making can really be hamstrung by an overreliance on evidence-based medicine. We've taken an oath to do the right thing. First do no harm. We try to do the right thing for everyone. And we look for all the resources we can to do that. But those resources aren't always accurate. And the resources are changing over time. And our language even as we discuss these things together-- so when I'm trying to figure out a treatment plan for someone and the literature isn't clear, you call the experts in the field. And then you find that their language is a little bit flexible, too. So what you thought was a firm treatment plan is not. So that was the first thing I wanted to convey. And in the language between Joshua, who is very matter of fact about, we did this, and we did this, and we did this-- and then my reflection was, ugh. This was early in my career. And I was flying by the seat of my pants. And every one sentence he said was like two weeks of my life trying to figure out the right thing to do. The second point that I wanted to bring out-- and this was really when I had to tell myself to breathe during his talk. It was literally that overwhelming for me-- is that we as physicians and our medical license really conveys an incredible amount of power, and much more power than I had realized. We use our superpowers for good. We get people through the ICU. We get them through the OR, that sort of thing. But this was a time when the power and the recommendations that I was giving a young mom with a newly diagnosed pregnancy-- and one that she had tried for years and really was invested in this pregnancy, more so than I can even convey, but not that I really understood at the time-- was that everything that I was asking this woman to do either had potential harm or could result in pregnancy loss. In fact, her prior doctor did tell her that she needed to have a pregnancy termination. So that whole power that we wield may have-- if I got my way, this whole meeting may not have happened. Or it may not have had the same intensity and power that it did for me. And I was just grateful that I listened to the patient and this point of view, which brings us to the last point that I really wanted to make-- was that patient autonomy really needs to be respected in a therapeutic doctor-patient alliance. We call it a relationship. But really, we are trying to work together for the greater good. And there are times, such as this one, when we may disagree. That doesn't let us off the hook. As clinicians and physicians who are trying to get the best for our patients, our values may differ from theirs. And then when you add the conspiracy of evidence-based medicine on top of it, which should inform our decision making but may hinder it, then we're sometimes at odds with what evidence-based medicine is telling us and what our patients desire. And in this case, the informed decision that when it was right at the end of it-- and again, it doesn't always work this way-- was that in the absence of strong evidence-based medicine, I took the patient's route and willingly but difficultly walked that path with her. And it's made all the difference. It really has taught me that an informed patient who is making a different decision from you-- neither of you are wrong. You just have to respect their values and what they bring to the doctor-patient relationship. So those were the three points for me that I was trying to get across-- patient autonomy, the power that we wield as physicians, and that medical decision making needs to be more than just evidence-based medicine. Beautifully stated. And you wrote in there that you shared this essay with Vivian. Did I read that correctly? I did. I did. And what was her response? She was about as overwhelmed by this as I was. She was thrilled that her story was now informing both young physicians and seasoned ones through the Journal of Clinical Oncology and that their story could help to show the power of patient autonomy. She herself has become a very strong advocate and is on a board of a major ovarian cancer network for patient advocacy in addition to being a competent PhD in clinical psychology. So this is a very accomplished, smart, savvy woman who is pleased to have the podium to speak and be heard in ways that she's been trying to for the majority of her life. And I'm just grateful to be part of it. I can't tell you the power of the speech. Here's this 15-year-old kid who steps into a podium. It's a big room of 300 people. I can't imagine doing what he did. But I literally had to tell myself to breathe a couple of times. He was so powerful in narrating this story. So I think they are both grateful to have this come out and to have their experiences inform others. Well, thank you Rich. The essay is very moving. And your empathy and compassion and curiosity comes across so loudly and clearly. So thank you Vivian, Josh, and Rich. And thank you for participating and talking with me this morning. That was Rich Boulay, talking about his essay "The Boy I Never Knew." Join me next time for a conversation about the art of 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.

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 Cancer Stories. I'm Dr. Daniel Hayes, a medical oncologist. And I'm a translational researcher at the University of Michigan Rogel Cancer Center. And I'm also the past president of ASCO.

Over the next several podcasts, I am privileged to be your host for a series of interviews with the founders of our field. Over the last 40 years, I've been fortunate to have been trained, mentored, and frankly, inspired by many of these pioneers.

It's my hope that through these conversations, we can all be equally inspired by gaining an appreciation of the courage, the vision, and the scientific understanding that led these men and women to establish the field of cancer clinical care over the last 70 years.

By understanding of how we got to the present, and what we now consider normal in oncology, we can also imagine and work together towards a better future, where we offer patients better treatments, and are also able to support them and their families during and after cancer treatment.

Today, I am very pleased to have as my guest on this podcast, Dr. John Minna. John is generally considered one of the pioneers of translational research in solid tumors, and he's widely recognized as a leader in lung cancer.

Dr. Minna is currently the director of the Hammond Center for Therapeutic Oncology Research, and Professor of Internal Medicine and Pharmacology at the University of Texas Southwestern Medical Center in Dallas, where he also holds the Max L. Thomas Distinguished Chair in Molecular Pulmonary Oncology, and the Sarah M. and Charles E. Seay Distinguished Chair in Cancer Research. Dr. Minna received undergraduate medical degrees from Stanford in the mid-1960s, which were followed by a residency at Harvard's Massachusetts General Hospital in Boston. He then went to the NIH, and the National Heart, Lung, and Blood Institute for his fellowship in biochemical genetics at the NIH with Dr. Marshall Nirenberg. And then he stayed at the NHLBI as the head of the section on somatic cell genetics.

In 1975, he became chief of the NCI-VA Medical Oncology branch within the Clinical Oncology program of the Division of Cancer Treatment. And in 1991, he then moved to University of Texas Southwestern in Dallas, where he served as the director of the Sammons Cancer Center and Chief of the Division of Medical Oncology for four years. And since, he has held his current position. Doctor Minna has authored over 700 peer-reviewed papers, and well over 100 other reviews, book chapters, and educationally related manuscripts. He's won too many awards and honors for me to go through in detail. But these include the AACR's Rosenthal award, and ASCO's Scientific Achievement Award, two of the highest in those two organizations.

He's also received the ASCO Statesman Award, and he's served on both the AACR and the ASCO boards of directors. He's been PI of the combined UTSW and M.D. Anderson Cancer Center Lung Cancer Specialized Program in Research Excellence. And in 2015, he was named one of the Giants of Oncology by OncLive.

Dr. Minna, that's quite a mouthful, though. Welcome to our program. Thank you so much, Dan. And thanks for all your work in ASCO and everything, too. Well, actually, it was, as you can imagine, a great privilege. I just had a fabulous time. Just as an aside, when I got elected, I interviewed about 10 former presidents. And at the end of each of my set of questions, I said, well, fill in the blanks. What do you want to talk about? Almost everyone of them said the saddest day of their career was the day they had to quit being president of ASCO. And I know that now. Anyway, now I know you went to Stanford. Were you always a California boy? Or how did you get to Stanford? Well, yes. I was born in San Francisco, actually at the Presidio, which is now a fancy movie set-- some of the priciest real estate. And then, my dad was in the Army. My mom was a nurse. And then I grew up in San Diego. And my Dad had the largest family practice in San Diego. And my mom was the nurse that ran the office. I never forget, I called them one day when I was an intern at Mass General and complained I had 25 outpatients that I saw that day. And they laughed. They'd seen 80. And I made maybe 500 house calls with my dad, carrying his bag when I was younger. And so, he obviously was in medical school just before and then right after the Depression. And so, he had had an opportunity. He was going to do a fellowship in pediatrics at Harvard, but couldn't do it. He had to support all his parents and everything. And, by the way, he had immigrated from Italy when he was a kid. So this was quite a story. And so they always encouraged me to go into academic medicine. It was interesting, because all his buddies were surgeons that kept telling me to come back and be a general surgeon in San Diego. So anyways, I grew up in San Diego. And then was lucky enough to get into Stanford undergraduate medical school. So I went back and looked at your publication list, which dates back to the mid-1960s. By the way, I was in junior high then. It looks to me from your list of publications that you weren't originally headed to a career in oncology. In fact, it looks like you were doing genetics. So you've done a lot in lung cancer. Tell us what happened at the NIH that you sort of changed gears and went into lung cancer. Well, actually, the cancer decision was actually made back in medical school. And it was those-- two of the people that you mentioned when we were talking before, Henry Kaplan and Saul Rosenberg, that really inspired me at Stanford. And they both took me under their wing. I remember the last six months of medical school I spent full-time on radiation oncology. Actually, I worked up nearly 100 new patients with Hodgkin's, if you can imagine that. It's all because of the clinical trials going on there at Stanford. So there were all these new patients coming in. So both of them absolutely got me committed to a career in cancer way back in medical school, and then helped get me internships, residencies. It was Henry's letter to get me a position with Marshall Nirenberg. But both of them were instrumental. And they took a group of young people-- another person that was a year behind me was Ron Levy, obviously, a very prominent person in oncology. And there was a group of us at Stanford that they took under wing. And so as medical students, we were going to these clinical protocol conferences in cancer, which probably didn't exist anywhere else in the United States at that time. And it was just amazing to see the two of them work together-- totally different personalities, but extremely skilled clinically and in terms of clinical trials. So that was an exciting time. And so the decision for me was made way back there when. And as part of it, at Stanford Medical School, I was fortunate enough to do my research in the Department of Genetics. And the person that took me under his wing there was Leonard Herzenberg, who was the guy that invented the fax machine. Obviously, probably should have won the Nobel Prize for that. And so it was kind of genetics on the one side, and cancer on the other. So you can see how that kind of evolved going forward. What struck me at Mass General was that there were fantastic clinicians and everything. Obviously, a lot of cancer. But nobody wanted to take care of the cancer patients in Mass General. So an intern resident, I kind of volunteered for all of that. And then when I got to the NIH with Marshall, it was more genetics and everything. And we can talk about that. But I realized after five to seven years there I was either going to be a basic researcher, or get back to my clinical love. And that would have been cancer. So those were the ties that brought genetics and cancer together for me. So can I ask you, when you were in Boston, who was the chief of medicine at Mass General? Oh, gosh. [INAUDIBLE]. The real question I'm asking is, had Dr. Farber's work filtered across town to you guys? That was just about the same time he was starting to give chemotherapy to kids over at Children's. Right. No. Obviously, they knew about it. But it really wasn't discussed at all there. And there was obviously a separation between what was going on at Farber and the Brigham and then at Mass General. Now, obviously, things are much more integrated. So what made you go into lung cancer after you got to the NIH? I think it was Vince DeVita. But it happened because I actually-- so I'd been with Marshall and they had given me my own group to work with there that we mentioned. And I'd been working on somatic cell genetics. And so I went to Vince and I said, look it, I have to do an oncology fellowship so I can learn about this stuff now and get ready. Of course, this is-- the boards came in '75, which were later. And so he said, well, John, I'm not going to do that. But I tell you what. There's this branch of the VA hospital that [INAUDIBLE] [? Anson ?] and Frank [INAUDIBLE] and [INAUDIBLE] are running. And I'm trying to decide whether or not to shut it down. So I tell you what. Why don't you go down and run that? And then you'll kind of learn on the job. And, of course, being 35, 36 years old, you think you can do everything. And I said, well, who's the staff there? And he said, well, they're all leaving. And fortunately, one guy [AUDIO OUT]. So I said, well, who are the fellows coming out of the program that are the best fellows? He said, well, that's easy. It's Dan [INAUDIBLE], Paul Bunn, and Jack McDonald. And so I said, well, if I go talk to them, will you at least back me up? And so I did. And fortunately, two of the three agreed to come. I said, you're going from being a fellow to being a senior investigator here in one fell swoop. But this is it. Jack went with Phil [? Stein ?] and did all the work on GI. Phil was leaving the NCI to go down to Georgetown. So they did that. And fortunately, Marty Cohn was down at the VA. He is fantastic clinical trials [INAUDIBLE] and done work with lung cancer. And we did all of that. And so, we went down there. And so, I said, well, OK, got to work on lung cancer. And so we've got to then start working on the genetics of lung cancer. Of course, everybody said that was totally stupid and not possible. And fortunately, I had my collaborator who had been part of the oncogenic virus program, a pathologist, Dr. Adi Gazdar [INAUDIBLE]. So I said, Adi, come on down, and we can do that. So there was people that really gambled on me. Yeah. I wanted to talk about your association with Adi. Before I get to that though, what were you doing for lung cancer in the mid '70s? It must have been pretty crude. Well, we thought it was pretty sophisticated. And, in fact, what we-- obviously, there was the whole series of the first phase of small cell lung cancer clinical trials. There were first reports that occasionally patients respond, have these dramatic responses. And so we set up these whole series of trials. And, of course, at that time, nobody out in the private world wanted to take care. So these patients would come flooding in. And we would do all the staging, get their tissues, and then try to start cell lines from them that nobody had been able to that before. But then they all went on to randomized clinical trials. And Marty Cohn played a big role in that. Obviously, Dan [INAUDIBLE] and Paul Bunn were instrumental. Des Carney came on. And so, these were various combination therapies that [INAUDIBLE] essentially leukemia-like treatment. But Vince always thought the reason we weren't in small cell lung cancer was that we weren't tough enough. And I kept saying, Vince, we're getting-- we're putting them in isolation. We're treating them with more intensive regimens than with leukemia. And so odd responses, but not. And then the other important component of that was Eli Glatstein's recruitment to the NCI as head of the NCI radiation oncology branch. And he really was-- I mean, briefly had known each other at Stanford. And because we were both tied to Henry Kaplan, that made Eli and me instant friends. And basically, we were like brothers. And so he totally threw the support of the radiation oncology branch behind that. And then there were a series of trials with that. Allen Lichter, former president, obviously, and Joel Tepper, he [? added ?] parts to that. So that was fantastic. Anyone from-- So it must have been pretty exciting for you to see some of the first complete responses with chemotherapy in a solid tumor with a small cell. Absolutely. And that's what-- you know, at that time, and particularly then when we started putting this with limited stage, we were really hoping there was going to be a big tail on the survival curve with people who got put into complete remission being able to remain there. And obviously, the therapies would combine modality with chemo and radiotherapy were complex, too. And we were very fortunate to have the various skillful skill set from the radiation oncologists to work with that. And then in '81, by the way-- so we were at the VA from '75 to '81. And then from '81 to '91, it was the NCI-Navy Medical Oncology Branch, when Vince moved us all up to the new National Naval Medical Center. So you and Dr. Gazdar obviously have had a decades-long collaboration. And how did the two of you even hook up? Was it just because you were providing specimens to him in the pathology lab? Or-- No, no. It all actually started five or six years before. We were-- as part of the somatic cell genetics effort is-- I don't know if you remember, there was also a big effort in terms of isolating tumor viruses and the study of retroviruses. And it turned out that the genetics that I was doing with somatic cell genetics could be used to map receptors for retroviruses. And so he and I collaborated on studying the genetics of RNA viruses in human cells and assigning the various linkages to different chromosomes. And so when, again, as I said, when Vince offered me this battlefield promotion, I knew were going to need a laboratory thing. So I said, Adi, come on down. I said that we were going to have to-- we can't study viruses. We're going to need to study something else. And it's going to probably be lung cancer. And so he agreed. And obviously, he has trained as a pathologist, even better part. And he's now, obviously, one of the world's leading lung cancer pathologists. The other person that was at the VA whose name you may not know is Dr. Mary Matthews, who is a pathologist. And she did a lot of the first VA studies, actually determining that small cell lung cancer was highly metastatic, even when it appeared to be localized. So she was-- I've seen her work. Yeah. Actually, so you were there when viruses were going to be the cause of every cancer. Did you get a lot of pushback if you began to say, I don't think that's the case? Well, it's kind of what goes around comes around. We didn't-- no. As it turned out, it was oncogenes that are cause of cancer, which were discovered through Bishop and [INAUDIBLE] thing too. But you do know the other interesting connection with us and viruses and cancer is that we were obviously studying lung cancers and patients and that. But then, Paul Bunn was extremely still interested in lymphomas. But the way the politics, the Onco politics at the NCI intramural program went, that was already the domain of the medicine branch, Bob Young's branch-- Bruce [? Jander ?] and Dan Longo and Bob Young. But there was one lymphoma that they absolutely wanted to have nothing to deal with. And that was Sézary syndrome mycosis fungoides. So Paul said, OK, we're going to study mycosis fungoides. So both at the VA and at the Navy, we had just huge numbers of patients with [? MF ?] come in. And that involved a variety of studies with electron beam and various therapies and staging that Paul was a major figure in. Well, as part of that-- so we started cell lines, tried to start cell lines from those as well. Well, the other thing that was happening was Bob Gallo's discovery of IL-2, T-cell growth factor. And so we got some of that from him, and were able to study, to grow several of these. And it turned out, one of these was from a young patient with highly aggressive HTLV-1 disease. It was a young black guy from the South. He had one of the first-- you know, his bone scan was a super scan with [INAUDIBLE]. Now, we know. So we didn't do that. And it turned out that Bernie Poiesz was a fellow rotating with us. And he went back to work in Gallo's lab and took those cells. And, of course, Gallo was searching everywhere for oncogenic viruses and retroviruses. And the super [? agent ?] from this cell line, H102, blew the roof off. And it turned out to produce HTLV-1. And that was [INAUDIBLE]. Actually, Henry Kaplan submitted for us to PNAS that was with Bernie and Bob Gallo. And that was the first human retrovirus that was discovered. And then it turned out there were other patients that we had, obviously with T-cell lymphomas, that didn't produce virus. But it turned out that those were ones that the virus could replicate in. And that leads off into a whole separate story that you probably need to talk to Adi Gazdar about, because he started this line. And that's the whole Bob Gallo thing. But the point is that Bob knew that if you could get a T-cell line to grow, it could make the retrovirus, and you could identify it. And so, he kept trying to grow T-cells from patients, at that time young, gay guys from New York and San Francisco. Of course, nothing would grow because they were all being killed by HIV. But there were these T-cell lymphoma lines that had that property. So, in any event, this whole thing came back to viruses, that-- it's not my [INAUDIBLE] study. But it was Adi's and Bob Gallo's. You know, you've through this talked a lot about the basic science and the observations. And the term translational medicine really hadn't been invented yet. But you, and I would argue, Marc Lippman and Bill McGuire in breast cancer, were really some of the first to span the gap between [INAUDIBLE] in the clinic in solid tumors. My impression is leukemia and lymphoma had been going on, but it was the solid tumors where you made your big step. Were you thinking about that the whole time? How can I take this and take better care of Mr. Smith or Mr. Jones? Were people trying to stop you from doing that? Who was your role model to give you the courage to move forward? No. I think if you were present back at the NCI-VA and NCI-Navy, it was pretty clear-- and this didn't require any set of smarts-- that the whole idea to start these things was to have models that you could then test to see about new therapies in order to find out what were the underlying causes. And so you remember back there was the [? Amberg ?] and Dan Von Hoff assays for tumor cell sensitivities. So a lot of our first studies were looking at drug response and radiation response phenotypes. And one of the interesting first things was that the small cells, most of them were exquisitely-- they were like lymphocytes, sensitive to radiotherapies, which was what it was like in the clinic. So I think that there was probably kind of obvious some of the things to do. I think the obstacles were-- first of all, the major obstacle was everybody blamed the lung cancer patient for having lung cancer because they smoke. And I'm sure Franco and anybody working in the lung cancer field with Franco Muggia would tell you this. And we're finally over that, I think, and also with the never smoking lung cancer cases. So that was one big obstacle. I think having these models to work with was another. And then just having the genomic techniques to study them. I look at our first publications in Nature with Southern blots and a few samples. And now, you couldn't even-- this wouldn't even qualify as supplementary supplementary data. Actually, I don't know if you were at ASCO. Bruce Johnson's presidential address was an elegant description of the progress made in lung cancer. And he showed pie charts of 10 years ago. And the entire treatment was chemotherapy. And now it's broken up into all the different precision medicine and immunoncology. I've got to think if you were in the audience, and if you weren't, that's fair. But if you were sitting here thinking, boy, shake my head. We've made a lot of progress. Oh, [INAUDIBLE]. Well, I tell you, I get-- some of those slides I know Bruce was-- I was giving those to Bruce. So, you know, clearly, those were the types of obstacles. And everybody thought that-- first of all, everybody thought that lung cancer was not a genetic disease. And in retrospect now, it's obvious. But, you know, so I think there's that-- the technologies. So one brief anecdote about-- and you probably saw this, too, at the Farber. I'll never forget at the NCI-Navy, all of the senior staff rotated. And we had several months worth of attending in there. And we were taking care of patients with all kinds of tumors-- breast, lung, everything. And we had our own ward with 40 beds. And we saw about 70 patients elsewhere in the hospital. And we had 100 patients a day in clinic. So it was a huge service. So I go up, and I'm doing my first day of attending. And I introduce myself. And I'll tell you who my fellows were on that round. So one of them was Nancy Davidson. The other was [INAUDIBLE]. The other was Neal Rosen. And one was George Morstyn, who subsequently became a-- Australian guy became a VP at Amgen. And so they're presenting these cases and everything. And I go back, and I sit down with Paul and [INAUDIBLE] and Dan [INAUDIBLE]. And I say, Jesus. I said, I can't believe it. We have some really good fellows this time. At another time offline when it's not recorded, I'll tell you some of the presentation that Neal Rosen gave that time, which was vintage Neal. And I say this mainly because to our oncology fellows now, I say, look right, look left, and there's going to be some really interesting people that you're meeting right now. Just remember them several years down the line. You know? Nancy was no different in her presentation today than when she gave her presidential address. She had all the [AUDIO OUT] and everything. And so, that was great. Nancy and I are the same age, but she's been my role model for 25 years. [AUDIO OUT] The other thing-- Well, a couple of other questions-- you've been on the board of both the AACR and ASCO. And I'm interested in what you see as both the contrasts and the mutual initiatives going forward and how they've evolved. Do you have any insights into that? Well, I think Saul Rosenberg may have said something about this [INAUDIBLE] to you. He always, from early on, lamented that, quotes, "commercialization" of ASCO, as opposed to its academic thing. I think, number one, ASCO has done a fantastic job in terms of medical education at many different levels. So I think that's a major success. I think also what clearly is needed now is that we get more of the real world experience. So if patients are treated with checkpoint inhibitors with lung cancer, we don't need to know the results of 300, or 400 patients, or 500. We need to know what happens in 10,000 or 20,000 patients. And the only way we're going to get this is to have some kind of interaction with everything that's going on in the real world. And I think ASCO is positioned to do that. And so, I see that type of interaction being very important. Back when I was on the board, there was-- well, how many people from the private sector should be on the board? And we need to have them have a voice, and all of this. And there was kind of the-- then some people in the private sector trying to take control of ASCO for their own group practices. And we won't go into any names or anything here. But I think what's eventually come out is the possibility to really be the best for everything, both educational, translation of findings. So if there's real improvement in discoveries which have happened to be made, we obviously want to get them out as quickly as possible. Patients demand it. But then also, that we can work out some way to get feedback. Actually, this is one of the reasons-- you've hit on a couple of big initiativies over the last 10 years that I've been involved with. One is the development of CancerLinQ. And we hope that CancerLinQ will provide exactly the kind of data you just asked for. The other is the establishment of the Department of Clinical Affairs, and reaching out to the state-affiliated councils. Steve Grubbs is our Vice-President for that. And it's made a big difference. So that instead of being us versus them, academic versus private practice, it's us versus cancer all together. I'm glad you noticed that, actually. One final question, and this is a bit of a trite question. But I'm asking each of my guests on the show, what do you consider your legacy, your greatest accomplishment? In the end, what are people going to remember John Minna has done to change the face of oncology? Is it your science, or your mentoring? Or what's the one thing you would put your finger on? Well, I think Bob Young and I have an agreement about this. It's the mentoring and everything. And I think training the next generation, setting the example, is very important. I would say one other thing that's really important about ASCO that I see going forward is integrating surgery, radiotherapy, other disciplines, too. And I think it's been very successful. It wasn't necessarily all that way at first. But it's been really key. And getting a chance to know some of the giants in surgery and giants in radiation oncology, like Sam Hellman and Eli Glatstein. And I think Vince, in his book, in many ways saw that, too. The DeVita textbook with Hellman and Steve Rosenberg was an important example of that. So I think that's another important legacy from ASCO too. I agree. Well, actually, I think we've run out of time. Dr. Minna, I can't tell you how much I appreciate your taking the time to speak with us today. I'm sure the memberships can be thrilled to listen to the stories you've told. It's interesting, you've referred to several people I've actually already interviewed, or have planned to interview in the near future. You dropped a lot of names. And that's because-- and you sort of alluded to this. I'm not sure any of us recognize where we are in history at the time that history is being made. And then you look back and say, wow, I was there. And that you were fortunate to be at the NIH in those days. I was fortunate to be at the Dana-Farber in a few years after that. And you shed a lot of light. It's been terrific. Any final comments or parting words? Well, no. I think the one thing I would say is I was thinking back to those early ASCO meetings where there would be 5,000, 7,000, 8,000. So you couldn't even walk from one place to another, because you were always stopping and talking. And now you go to 15,000, 17,000 more. And I remember John Niederhuber and I, when he was director of the NCI, on the third day of ASCO walks through and he grabbed me, and he said, John, you're the first person I recognize. And I [INAUDIBLE]. We had roughly 40,000 people at the meeting this year. Yeah. I think that the question-- so going forward is how we need this family, but how do we get it so it could also be on the personal level? Anyway, Dan, it's been good talking to you. And we thank you for your service, Dan. Thank you. It's been great. For more original research, editorials, and review articles, please visit us online at JCO.org. This production is copyrighted to the American Society of Clinical Oncology. Thank you for listening. [MUSIC PLAYING]

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.

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 ASCO's podcast series of cancer stories. I'm Dr. Daniel Hayes, a medical oncologist and a translational researcher at the University of Michigan Rogel Cancer Center, and I'm also the past president of ASCO. Over the next several podcasts, I'm privileged to be your host for a series of interviews with the founders of our field.

Over the last 40 years, I've been fortunate to have been trained, mentored, and inspired by many of these pioneers. It's my hope that through these conversations, we can all be equally inspired by gaining an appreciation of the courage, the vision, and the scientific understanding that led these men and women to establish the field of cancer care over the last 70 years.

By understanding how we got to the present and what we now consider normal in oncology, we can also imagine and we can work together towards a better future where we offer patients better treatments, and we're also able to support them and their families during and after cancer treatment.

Today, I'm fortunate to have my guest on this podcast as Dr. Saul Rosenberg, who is generally considered one of the pioneers of cancer chemotherapy, especially for lymphomas.

Dr. Rosenberg is currently a professor emeritus at Stanford University, where he served as the director of the lymphoma program for several decades dating to the early 1960s.

Dr. Rosenberg was raised in Cleveland, where he went to medical school at Case Western Reserve and followed that with an internship at University Hospitals in Cleveland. He then did his residency at Harvard's Peter Bent Brigham, now the Brigham and Women's Hospital in Boston, and completed a fellowship at Memorial Sloan Kettering in 1958.

He then moved to the west coast, where he joined the radiation oncologist, Dr. Henry Kaplan, to transform the approach towards lymphoma from one that was principally radiation-based to using radiation and combination chemotherapy.

Dr. Rosenberg has authored over 150 peer reviewed papers. He has edited several textbooks, in particular one of the classic textbooks on lymphoma. And his teaching and his mentoring skills are legendary among Stanford trainees and frankly as well as the rest of us.

Dr. Rosenberg has won more awards than I can count, but most importantly to me is that he also served as president of ASCO in 1982 and 1983.

Dr. Rosenberg, welcome to our program.

Thank you. I'm glad to be there. One thing you did not mention [INAUDIBLE] was I spent six years in the radiation oncology laboratory while I was in medical school. That helped start me on my career very much.

Actually, you beat me to the punch. I didn't mention it, but I was going to ask you if you had trained there.

In fact, that segues. I know you grew up in Cleveland. Can you tell us just a bit more about your background? I know that you entered college at a pretty young age during World War II and then had to step out for a while. Can you give us the background and your circumstances and what led to all that?

All that's true. I tried to get into medical school when I was 17 in order to not get into World War II. That wasn't successful at the medical school for various reasons. They thought I was too young and they'd [? hit ?] Jewish quota, so I dropped out for a while, went back to night school, and then reapplied when I was 22. They didn't accept me at that time because of my unusual activities, and so they assigned me to a research lab that I did not pick, which was the atomic energy research lab in Cleveland.

It had the initial goal to teach radiation oncologists and to use radioisotopes, but that set my whole career toward radiation. And during the two years in the lab and then four years in medical school, I studied radiation oncology, radioisotopes, tumors, and I developed a great interest in the lymphomas at that time.

So did you ever actually then do clinical radiation oncology, or this was all when you were in med school before you became faculty?

It was all before my faculty, but I've always been a member of the radiotherapy department. I've taken courses in radiation research and physics, and I'm an honorary member of the radiation societies.

That's terrific. And so that must have served you well when you worked with Dr. Kaplan.

It was necessary because I presented papers at the radiation meetings, and he recognized me, and when I was searching for a job and the one worked out perfectly at Stanford. And that's how we connected.

So can we go back for a moment? I'm very interested in these interviews in why, for example, you chose to go into medicine in the first place. What led to that?

And more importantly, especially in the 1950s, when there was no real medical oncology, what got you into doing medical oncology?

Well, medical oncology was all an accident because I went into this laboratory and studied radiation in tumors. Before I went to medical school, I didn't have any particular interest in that. When I was a youngster-- five, six, 10 years old-- no one in my family had ever gone to college. Nobody was a professional.

But the most respected man in our community was our primary care physician. And since I was a good student, my family and my teachers all encouraged me to try to continue to go to college and be a doctor. And that's what I did.

You sure did.

[LAUGHTER]

Actually, the other thing that was fascinating to me when I looked over your background was your days at Memorial. And so that must have overlapped for sure with Dr. Karnofsky. Can you give us some war stories of that time and what he was like?

Well, again, there was a great mistake that turned out so well. There was no oncology program when I left the Brigham, and I wanted to study chemotherapy and medical oncology. The only fellowship was called medical neoplasia, which I applied to at Memorial where David Karnofsky was.

I received that fellowship, and in July of 1957, I went to Dr. Karnofsky's office. And he said, "You didn't have a fellowship with me. You have one with Lloyd Craver."

So in fact I spent that time not with Dr. Karnofsky but with Dr. Lloyd Craver, who turned out to be the leading lymphoma specialist in the world. And I learned more about lymphoma during that year than anyone could possibly teach me.

I did, of course, know Dr. Karnofsky and during that fellowship period, I was acquainted with chemotherapy, nitrogen mustard, [INAUDIBLE] antagonists and [INAUDIBLE] antagonists. So it was a combination of some chemotherapy but mostly lymphoma research. And that set my whole career-- that mistake. I didn't have a fellowship with Karnofsky.

[LAUGHTER]

I actually always worry about someone I interview who knows exactly what they want to do. I usually say, you know, most of what I did was by luck. [LAUGHS] So sounds like you were too.

Oh, absolutely.

You know, with both of them, how are they putting things together for the treatment of one problem, though? Is it just let's pull stuff off the shelf, or was there actually some direction in terms of the science they understood at the time? What was the atmosphere at the time?

Well, it was very minimal. We had only three lymphomas that we knew we diagnosed-- giant follicular lymphoma, small cell lymphoma, and reticulum cell sarcoma, and of course Hodgkin's disease. But the pathology was so crude that there were very little specific therapies or much difference among the approaches to them. We, of course, used radiation therapy for local treatment.

And of interest was that with Dr. Craver, I would make rounds, and we would decide where to give the radiotherapy. We'd outline it on the patient with a red crayon, and we'd write a prescription for the radiotherapy and send them down to radiotherapy.

Now that's a remarkable story, because nobody nowadays could even believe that internists could do that.

It's unbelievable. Actually, I interviewed Dr. [? Hellman ?] for a previous one, and he gave a similar story that there were very few technicians, and you just kind of drew crayons on the patient and sent them down. [LAUGHS] It's a lot different than it is today.

Yes, it is.

That's amazing.

But the interesting thing was there were no computers at that time, and Dr. Craver's experience with lymphoma-- there were 1,269 cases that I reviewed for him and wrote a wonderful paper, I thought. It was published in Medicine in 1961 on 1,269 cases of a lymphosarcoma. And that set my whole career and my experience that was far above most other people of my age and my training. And that's what really made my career was that study.

Now, we had no computer, but we had a IBM cell sorter-- card sorter. And I completed 240 questions on each of 1,269 patients according to their charts, and the data I had was terrific.

So you did that with shoe boxes full of punch cards?

Oh, at least eight box-fuls because we had 1,269 cases-- three cards for each patient. But the card sorter could just spin out anything that I wanted to know and had so much data that there was no computer. And we had that-- was the first of the data systems that made it possible. And--

That's amazing.

It is.

And you did all the chart reviews yourself?

I did all of it myself because I was disappointed I wasn't with Dr. Karnofsky. But I made the best I could. And it was actually a wonderful experience with Lloyd Craver.

Now, were most of those patients treated with radiation or was chemotherapy part of the game yet?

Well, we didn't have much chemotherapy at that time. We had steroids. We had radiation. We began to have some Leukeran and Cytoxin by the time I left there, but most of it was radiation and medical treatments with steroids. And very few patients had prolonged survivals, except for the follicular lymphomas which have such a good natural history.

Yeah. You mentioned that the very few classifications of the lymphomas-- can you give us some insight into when-- I live in Ann Arbor, for example, so the Ann Arbor classification, of course, is near and dear to the hearts here. But how did that all begin? I know you were involved in that early on too.

Well, I did very much. And the important work was done by three people-- Henry Rapoport, who at the time was in Chicago, Robert Lukes, who was in USC, and the German group. And they began to separate out the different forms of lymphoma. Henry Rapoport described the difference between follicular and small cell. And Lukes was careful about the Hodgkin's disease.

So their classifications began to be used in the 1950s and in the early 1960s. And they make dramatic differences. Ron Dorfman was a student of Rapoport at the time, though he came from South Africa. And fortunately, he came to Stanford, and that gave us a really-- step ahead on good classification.

Eventually, there was great debate about which the right classification it was. And we did a study for three years comparing six classifications around the world and which one gave the most data. And I was the principal investigator of that, and that led to a unusual classification called the National-- I can't even remember the name of it now. But it was a very unusual name, and nobody adopted it. Eventually this classification was dropped, and the new classification came out with immune markers and made a great difference.

But that classification in pathology was the stimulus that led to the more modern treatments of that time. And that was one of the great advances that led to two important research studies-- one in Paris and one in Rye, New York, which were virtually entitled "The obstacles to the control of Hodgkin's disease." But the pathology classification systems facilitated that along with tremendous advances in radiotherapy.

And I would assume almost-- what's called precision medicine now and targeted therapies-- those allowed you to begin to separate out patients who really didn't need systemic therapy and those who were more likely to benefit from the chemotherapy part of it. That must have really been an eye opener for you as you began to realize that.

Well, chemotherapy began to become more successful, of course, for leukemias and lymphomas during that period of the 1960s-- the early '60s. But radiotherapy was the only successful treatment that could control disease for long periods of time until good chemotherapy and combination chemotherapy became available. But the radiotherapy advances really advanced the treatment of Hodgkin's disease and some of the lymphomas dramatically.

So that actually, in some ways, segues to my next set of questions. How do you get from New York to Stanford? You said Dr. Kaplan had seen you present. Did he see you as joining him as another radiation oncologist, or did he see you as bringing in the therapy to complement what he did?

Well, the truth is I was offered a job at Harvard by Farber, and he told me I could treat patients with cancer at the Brigham, but not lymphoma and leukemia. So then I went back to Cleveland, where they did offer me a job in radiotherapy. But the new chairman of medicine did not think that oncology was an appropriate field for medicine. So I had to call Henry Kaplan as a third choice. And he rapidly accepted me and insisted that I had a role in the department of medicine, which they gave me. So I had faculty appointments in both, which I still have today.

Why did Farber not allow you to treat lymphoma?

Because he thought it was his property. He didn't want it over in the other hospital.

Ah ha. That's-- he had passed away before I got to what was then the Sidney Farber Cancer Institute, but I've heard stories like that.

So when you got to Stanford then, how did you all start working at chemotherapy? I know that was before the time that the folks at the NCI had really reported the high response rates with combinations. You must have taken that along with you.

Well, I knew that, but the treatments with more than one drug wasn't really popular at least until the early '60s. When I got to Stanford, they put me in the hematology department where I was supposed to do hematology, which I only had minimal training in. But I had a lab in radiation oncology, and I was in the clinic with Henry Kaplan, and we decided that we would treat Hodgkin's disease because of the development in radiotherapy.

But I insisted that I would treat cancer in the department of medicine, and that was not popular anywhere in the country. And after they found out I couldn't do much red cell medicine, I started a program for cancer patients, and we needed a name for it.

And I got together with four people, BJ Kennedy, Paul Carbone, and the fellow at Hopkins-- what's his name? I'll remember it. But with four of us decided that we would have cancer treatments in the departments of medicine, and we would call it oncology. And that's where the name began.

And several of them at Hopkins and at Minnesota had separate departments of oncology-- eventually departments of cancer. So it was very unpopular in departments of medicine, and hematologists to try to prevent us from treating cancer in departments of medicine for at least 10 or 15 years.

Gradually, we established what we were, and now it's one of the largest divisions of most departments of medicine.

Yeah, I think most of our younger colleagues would be surprised by that. I came in in the early '80s and was struck by the fact that most of the major departments of medicine had given oncology away because they felt that the smart folks were working on in red cell stuff, as you pointed out, and the dumb folks could go get 5-FU. What they didn't realize was that there was a tsunami of academic interest and advances just down the pike. And it's interesting that you had to go make your own department just to be able to do that.

What were the facilities you had at Stanford to give chemotherapy? Did you just have a nurse that followed you around and gave it, or did you actually have a fusion space or--

Nothing like that. I separated from the hematology clinic, and I would see patients in my own room. There was only one room. I found one fellow who had trained as an [? NCI ?] named Richard Shaw. And we began treating patients with breast cancer and ovarian cancer and children with various childhood malignancies and leukemia.

And curiously, when we gave nitrogen mustard, we did it in the hallway of our clinic, and start an IV and mix up the nitrogen mustard and inject it rapidly.

There were no infusions facilities whatsoever. It took many months and years to develop what you now think of as a cancer clinic.

So you mixed up your own chemotherapy?

We did, and I treated any kind of cancer, including children. And we began to see some responses. But the drugs began to come in in which we had a little bit of benefit, but before we could get combination chemotherapy, especially for the lymphomas and leukemias, we didn't have a lot of success.

And how did you get Referrals As the department of medicine didn't like what you were doing, did they all come from the surgeons and the radiation oncologist or--

Yes.

Where'd they come from?

Mostly referrals, but also Stanford began to let it be known that we would see patients with cancer and make a diagnosis and refer them to the proper departments for treatment, and that we had medical treatment. So we attracted patients from the community. Stanford didn't have a big clinical program until it was transferred from San Francisco, but our cancer program became known.

I must give great credit to Henry Kaplan, who was a tremendous power and leader of the field. And that attracted a lot of cancer patients to Stanford. And of course, you know that Henry Kaplan and his colleagues invented the linear accelerator, and that made a huge difference in the way we treat patients even today. So he and Ed Gintzon, who is a linear accelerator man, invented the linear accelerator which provided us with super voltage therapy of one million electron volts or more. And that completely revolutionized the treatment of cancer.

Yeah, even when I broke in in the early '80s, that was not universally around, but you would see patients who basically were put in front of the machine. They turned it on for a couple seconds-- not at Harvard but outside the Harvard. I know nothing about radiation oncology, except I knew that wasn't right. [LAUGHS] And so we owe Dr. Kaplan for lots of reasons, really-- in great debt, but that probably is one the greatest step forwards.

Can I ask another question. I've always been struck that you were one of the early proponents of randomized trials of lymphoma. That must have taken a lot of courage.

Well, it was necessary for me because Henry Kaplan wanted to use very broad fields in high doses, and he thought that he was improving the cure and survival of patients.

And I admired that and accepted it, but I thought that he was giving too much-- too wide a field and too high a dose for various reasons. So I insisted that if I were to see patients in radiotherapy that we would do trials that would compare two strengths of treatment primarily with radiotherapy-- one with very extended fields and high dose and to just the involved sites. And that's what my program was. And he wanted to extend the fields beyond where the disease was.

And we did randomized studies beginning in 1962. They were one of the very first clinical trials that were done in cancer and certainly the first ones in lymphoma. And those clinical trials modified and went on for years. We gradually proved that both of us were correct. Neither of us had an advantage over one or the other, but we learned a great deal about the diseases and their natural history and how to modify the treatments. And of course, eventually chemotherapy came in, and we combined it.

But it's a very long story the trials continue to today. We've treated over 3,000 patients with Hodgkin's disease on these trials. And we couldn't have been more successful.

Yeah, I think and again that was just about the time that Dr. Fry and others were starting the cooperative groups that could do randomized trials in those days. And you couldn't have had many role models. And again, "courage" is the word I coming up with to get patients to agree to be in a trial where the treatment wasn't assigned until after they signed up. These days we take it for granted, but it was not then true.

Well, it's true, but also Dr. Kaplan and I were very good clinicians, and patients trusted us. And they all accepted going on trial as long as both of us agreed that we didn't know the best thing to do. So that was the basis for a randomized trial. And our numbers of our patients were very small-- would never be accepted today as a trial. In fact, we could-- our statistics would not really show the advantage of one treatment over the other.

But what our statistics showed was we had patients surviving with a relapse free period-- a plateau-- that went beyond 10 years. And that was unknown in Hodgkin's disease at the time. It became unknown in large cell lymphoma as well as at the time.

The late Jim Holland who I loved and helped mentor me in some ways, but when I first joined [? TLGB ?] was sitting in the back of the room when I was presenting the proposal for randomized trials and yelled from the back of the room, "Hayes, if you need a statistician, it's not worth doing."

I said, "With all due respect, Dr. Holland, I think it is-- we're doing. But we need a statistician for that." [LAUGHS]

All right, so Dan, I had this same argument with J. Fry, right? He said that it was a scandal to have a control group. And I remember in public meetings, I would tell him only you and God know the difference between these two groups.

[LAUGHTER]

We argued for 50 years until he finally came to Stanford as a visiting professor, and we connected and admired each other's work tremendously.

Well, justifiably.

I want to ask another question. You've been involved with ASCO almost from the start, I think, and I noted you were present in the early 1980s. What made you run for president of ASCO? In those days, there wasn't much of an organization. It was 3,000 or 4,000 people. What did you see in ASCO that maybe others didn't at the time?

Well, I was forced to join by Vince DeVita. He was a member a few years before I was, and he talked about what he thought was right. And I thought that I was right. But the society made a big difference about bringing us together. And then Al Owens, who was at Hopkins, became president, and he invited me to be on the board and then to be his program director. So that's how I got in. Both DeVita and Owens forced me to join them. Then I became a member of the group and committed to it because there was so much value in sharing our information and data.

Well, I don't want to put you on the spot. This year we had 43,000 attendees at the meeting, I believe, in Chicago. Do you recall what year and where your first meeting was, and how many people were there?

I can't recall.

[LAUGHTER]

I think when I was president, there were about 8,000 attendees at the meeting. And we all went from one city to the other-- San Diego, New Orleans, St. Louis, San Francisco. But it got out of hand when we got up to $25,000, and the only place we can meet was in Chicago, which was a great loss because Chicago is a great city, but it was great fun to go all over the country.

Yeah, I think we'd agree with both of those, but Chicago handles this pretty well. So it's worked pretty well.

We're starting to run out of time a little bit, and I want to ask you a big picture question. And you've hit some of these. So what really is your legacy? How would you like the world to remember what Saul Rosenberg has contributed to the field? Is it your science or the administration issues you set up so that people actually accepted our field or the teaching and mentoring? I mean, you've mentored, in my opinion, some of the great oncologists in the world. How do you think this will come out for you?

There's only three things that I'm going to leave after me-- my children, my students, and my patients. And my advances for treatment were tremendous but are all now overturned and built upon. But my students, whether it be medical students or postdocs or my colleagues, were my greatest advance. I am so proud that they have succeeded so much. I felt that I have been a trunk of a tree, and every branch that comes off carries twigs and flowers and plants and exaggerate or emphasize-- multiply what I have done just because I started them off.

So nothing has been more important to me than to be a good teacher. And my students all know that I'm a wonderful doctor. That's what they tell me. And to be a careful, caring physician, how to talk to patients, how to examine them, how to tell them good news and bad news-- the skill of being a medical oncologist, and actually to be a physician in general is such a joy. I mean, to have these people depend on us and believe in us the moment you walk in the room, if you're gentle and you know how to touch them and to talk to them-- this is such a joy. I can't think of any other word in being a physician but especially being a medical oncologist. It has been a joy.

And are you still seeing patients?

I saw several this week. I've cut way back.

Yeah.

I see patients every other Monday. I see mostly my old patients or recent Hodgkin's patients, but gradually fewer and fewer. But there's-- I have 20 patients, perhaps, I won't give up. None of them have lymphoma anymore, but they all have complications of treatment, and they will not let me retire.

And 60 years ago, did you think you'd say that you have a bunch of patients who look like they're cured of lymphoma?

Never.

Yeah, it's something else.

Well, Dr. Rosenberg, you've been a great role model for all of us in the field, and we very much appreciate what you've contributed. I have to say your final statement is very similar to what other people have said to me as well-- George Canellos and others-- about their greatest accomplishments are the people they trained, and those of us who you have trained take that very seriously.

So thank you.

It's a great honor to talk to you. I hope the new therapies-- immunotherapies-- are going to make a big difference. I think they have promised to do so. And sometimes I get to be cynical. I mean, I've been through about six waves of great enthusiasm in treating cancer, chemotherapy, immunotherapy, the old-time advances in radiotherapy, genetics. And gradually there's been improvements but not the great breakthroughs that I want to see. Maybe this new approach will make a difference. I hope so.

Yeah, it looks like it. I said to a first year fellow last week that never in my lifetime could I think I'd say it looks like 20% of people with metastatic melanoma may be cured, and that looks like what's happening. That's pretty exciting, I think.

How about 90%--

Yeah.

--of Hodgkin's patients?

Well, actually a lot of that you had already knocked off before I got in the field.

[LAUGHTER]

Yeah, and I thought this is going to happen again. And it didn't for quite some time. But I agree with you. I think things right now are really, really starting to happen.

And we actually have just scratched the surface of the immunotherapy world. I think there are a bunch more checkpoints that are going to be discovered and therapies for them. So the toxicities are considerable, but as Dr. Fry always taught us, "Cure the cancer first, and we'll figure out how to take care of the toxicities later." And I think that's a pretty good strategy, actually.

Thank you. I actually--

[INAUDIBLE] Yeah.

OK, that's all. Thank you very much. I really enjoyed this.

You know, I've told other people it's like if I hop in a cab with Saul Rosenberg, what would I ask him for the next 35 or 40 minutes on the way to the airport? So this is fun for me.

All right. Thank you for asking me.

For more original research, editorials, and review articles please visit us online at jco.org. This production is copyrighted to the American Society of Clinical Oncology.

Thank you for listening.

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.

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 diagnoses 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.

Hello. Welcome to "Cancer Stories." I'm Dr. Daniel Hayes, a medical oncologist, and translational researcher at the University of Michigan Rogel Cancer Center, and I've also been the past president of ASCO. I'll be your host for a series of interviews with the founders of our field.

Over the last 40 years, I've been fortunate to have been trained, mentored, and inspired by many of these pioneers. It's my hope that through these conversations we can all be equally inspired, by gaining an appreciation of the courage, the vision, and the scientific understanding that led these men and women to establish the field of clinical cancer care over the last 70 years.

By understanding how we got to the present and what we now consider normal in oncology, we can also imagine and work together towards a better future, where we offer patients better treatments and we're also able to support them and their families during and after cancer treatment.

Today, My guest on this broadcast is Dr. Samuel Hellman, who is generally considered one of the fathers of modern radiation oncology in the United States and frankly, worldwide. Dr. Hellman is currently a professor emeritus at the University of Chicago Pritzker Medical School, where he served as the dean from 1988 to 1993. And he's been the A.N. Pritzker Professor of the Division of Biological Sciences. He's also served as the vice president of the University of Chicago Medical Center.

Prior to moving to Chicago in the late 1980s, he had previously been physician in chief and the professor of radiation oncology at the Memorial Sloan Kettering Cancer Center. He served there from 1983 to 1988, and he was also chair of the Department of Radiation Therapy at the Harvard Medical School, where he served as the co-founding director of the Joint Center for Radiation Therapy.

Dr. Hellman has authored over 250 peer-reviewed papers, and he's been one of the co-editors of one of the leading textbooks on oncology, Cancer, Principles and Practice.

Dr. Hellman has won many awards and honors, including being named a fellow of the National Academy of Medicine, formerly the Institute of Medicine, and of the American Association for the Advancement of Science. He is frankly, one of the few individuals to serve as president of both the American Association of Cancer Research and the American Society of Clinical Oncology, for which he was actually, I believe-- correct me if I'm wrong Dr. Hellman-- the first radiation oncologist to hold that position, which he served in 1986 to 1987. Dr. Hellman, welcome to our program.

Thank you for having me.

I hope I got all that right. Your introduction has taken longer than some of the others. You have been so prominent in the field. I have a series of questions. The whole point of this is sort of like Jerry Seinfeld's Riding in a Cab with Friends. I've always said, if I had an opportunity to right with some of the giants in our field, what would I ask them during a cab ride? So I get to ask the questions, and you get to answer.

I know you grew up in the Bronx. Can you tell us a little bit more about your background? I'm particularly intrigued about the fact that a boy from the Bronx ended up at Allegheny College in Pennsylvania. Why'd you go there? What was your interest? Was it always in science and medicine, or did you have something else in mind?

OK. Well, start with the Bronx. I was born in 1934 in the Bronx in a nice part of the city, which doesn't often go with descriptions of the Bronx today, but it was at that time. And about well, 1950, which was when I entered my senior year in high school, I had gone to high school at DeWitt Clinton High School.

And as I say, my senior year, we moved to Long Island, and I spent my senior year at Lawrence High School. The important part of this is that Clinton had about 4,500 to 5,000 boys, and Lawrence High School was much smaller and most importantly, coeducational, and that made me very much want to go to a smaller school for college and definitely one that was coeducational.

And so my mother and I took a little tour of colleges not too far from New York, but Allegheny was the farthest, I think. It's in Western Pennsylvania, very close to the Ohio border. And it was a beautiful day. I had a very nice two people showing me around, and I became enamored of the place. It was a very good fit for me, but I must say, my method was not a very analytic one, but that's how I got to Allegheny College.

And was science and medicine in your thoughts then, or did you have other things that you thought you'd do?

No, no. I was a middle-class Jewish boy from the Bronx. You're programmed to be interested in medicine. The old comment was, you know what a smart boy who can't stand the sight of blood becomes? The answer is a lawyer. And I was not offended by the sight of blood.

So I actually heard about your decision to go to SUNY Upstate Syracuse and the serendipity involved. And I'm always struck by how so many of us have what we plan and what we end up doing. Can you give us that story? I though it was really fascinating.

Well, I'm not sure what part of it you want, but I went to Syracuse Upstate because I won a state scholarship, and I hadn't applied to any New York state schools. And fortunately, the medical school advisor and a former Alleghenian, who was at Upstate, arranged an expedited interview, et cetera. So anyway, that's why I ended there.

Why I ended up in radiation oncology--

Well, that was my next question is, how did we get lucky that you decided to go into oncology?

Well, I interned at Boston at the Beth Israel Hospital, which was essentially very oriented to cardiovascular disease. Our chairman was a renowned cardiologist. He was the first one to use radioactive tracers. He used radium, as it turned out, and there is an award given by the nuclear medicine society. Their big award, their annual award is the Hermann Blumgart Award, and Blumgart was my chairman.

And Paul Zoll, the external defibrillator inventor, was there. Louis Wolff of Wolff-Parkinson-White syndrome was there. So it was a cardiac place. And internal medicine was what I wanted to do, but my father was quite hard of hearing and had a lot of trouble making a living, because he was so impaired. And electronic devices, of course, weren't available at that time.

And it was widely thought that otosclerosis which is what he had, was a hereditary disease. And so I was discouraged somewhat from entering medicine, not being able to be sure I could use a stethoscope.

Parenthetically, I have never had any trouble, and the disease is no longer thought to be hereditary but rather the sequelae of infectious diseases, either diphtheria or influenza. This was the great influenza epidemic. The two, one of those two.

But anyway, that's what he had, so I sought to do something else. And I was a little bit put off by taking care of disease which we really could not alter the course of. We could modify it. We could palliate, but probably if I were more dexterous, I would have become a surgeon. But I wasn't, and so I decided I didn't know what to do. I'd take a radiology residency and see where that led.

This was late in the year, and there were no radiology residences, literally, in Boston that were available. But a new chief had come to Yale, and he was starting a new program. And one of radiologists in a neighboring institute told me go there. So I did.

Well, he turned out to be a radiation oncologist, and he, Morton Kligerman and Henry Kaplan, were the two chairmen of departments of radiology who were radiation oncologists. And Henry had been at the NIH and got them to, with the National Cancer Institute, I guess, to start a fellowship program to encourage radiation oncology. And Kligerman applied for one, got one.

I was there. I was captivated by the opportunity to do some curative treatment. I was a chemistry major in college, and physics and chemistry were things I enjoyed. Sounded like a good choice, so that's what happened.

So there could not have been very many specific radiation oncology fellowship programs at that time in the United States. Is that true?

Yeah, very much true. The ones that stood out was, I say, Henry Kaplan's. There was a very good one at UCSF. And there was one in Penrose Cancer Hospital and one at the MD Anderson, and those were the ones.

So your decision to go oncology then, really your decision to go into radiology-- diagnostic radiology originally, sorry-- didn't sound like you were--

Not really. I took a radiology residency, because I thought it would be helpful whatever I decided to do. I really didn't expect to go into diagnostic radiology, but I figured that's something I could do. I didn't have much training or any training in that before. There was a great dynamic radiologist at the Beth Israel Hospital, and he captivated me. And so I figured, there's a lot to learn there, and I'll try it.

I think a lot of the younger doctors don't realize that the two were together for a long time. What's your perspective of the split between diagnostic and therapeutic radiology-- I've actually heard you talk about this, so I think I know what you're going to say-- and bringing them back together?

Well, I was a great proponent of it. The whole fields are entirely different. But having diagnostic radiology is extremely helpful in radiation oncology, because we depend on images to determine how we treat, where we treat, and so forth, so it was there. But they were interested in entirely different things.

And just parenthetically, when I took the Harvard job, I wasn't going to take it unless I had a promise that we could start a Department of Radiation Oncology. Shortly after I came, and the decision was made with just a shake of the hand that, after a year or two, I'd be able to do that, and that's what happened.

Actually, that segues into another question I had is I was looking over your background. I met you first when I was a first-year fellow at the medical oncology. That was 1982, by the way, a long time ago, when it was still the Sidney Farber.

And I'd heard about your legendary efforts starting the Joint Center and also your teaching methods with your own residencies. But you were rubbing shoulders with Sidney Farber and Francis "Franny" Moore and Tom Frei. That must have been pretty intimidating for a relatively young guy trying to start a whole new department. What was the impetus behind that?

It was an interesting experience. Dr. Farber was, of course, the dominant figure in cancer at Harvard, and nationally, he was one of, if not the great leader. I mean, but he was a difficult man, and I don't like to speak disparaging, but we had a rocky relationship.

When the Joint Center-- I'm getting ahead of my story, but it's appropriate to this question. When the Joint Center was started, it was started by Harvard Medical School, and the dean for hospital affairs was a man named Sidney Lee.

Dr. Lee had formerly been the head of the Beth Israel Hospital, the director, not the chairman of medicine but the director. And he got the idea that all the hospitals in the Harvard area were relatively small, the Mass General was across town and quite large, but that was not true for the Brigham or the BI or the Deaconess or what at that time was the Boston Hospital for Women.

And so he got them all together. So there were those, and I think I left out the Children's, but Children's was amongst them, as well as the Sidney Farber, as you say. Or at that time, it wasn't called that. It was called the Jimmy Fund, but that's another story, and one you know better than I, I suspect.

But anyway, those six were to get together when I started the Joint Center. Because Dr. Farber and I had so much difficulty with each other-- he wanted really for me to be reporting to him and being part of the Jimmy Fund but that wouldn't have worked with the other hospitals. He was not liked by any of the places, including Children's, which is where he was the pathologist.

So those six initial institutions, when we finally came to sign, turned out to be only four because the Children's wouldn't come in, and the Jimmy Fund wouldn't come in. For a number of reasons, two years later, they acquiesced, mostly because we were successful, and they were without supervoltage treatment, and it was just not sensible for them not to join. But that's my relationship with Sidney.

Franny Moore is a different story. Franny Moore was an internationally-known surgeon and expected to have his way, but he was very graceful, very nice. I had very few disagreements with him. He expected, and I think, deserved certain deferences. Sydney did, too, but it just made it too difficult to do that but Franny was not that way.

Franny and I came to the treatment, conservative treatment of breast cancer from different points of view. He didn't agree with it, but he was entitled to his opinion, and he was fine.

Tom is a different story. I got there ahead of Tom, and he came, and if anything, I helped out Tom, although he was much senior. Harvard has its own culture, as you know, and he needed at least an introduction. I mean, he sailed along fine after that.

And in fact, at one time, he and I wanted to start a joint residency program. It was to be a four-year program, which would have people take two years together and two years in their respective specialty. But the boards were not in agreement, so it was dropped. But Tom and I always got along fine.

Actually, that raises one of my other questions. I spent a lot of time in Europe, and the field of so-called clinical oncology still remains, combining radiation and medical oncology. In fact, they style it as a particular specialty in Great Britain. How did it evolve not that way in the United States?

Radiation oncology went off on its own. And I think you had a lot to do with really professionalizing radiation oncology as a specialty in this country. Is that not true? I'd be interested in your perspectives on this, too.

Well, I should parenthetically say that I spent a year in the National Health Service in 1965, while I was a fellow at Yale, in clinical oncology at the Royal Marsden Hospital, their major teaching hospital for cancer. And I always believed in the joint efforts of a non-surgical oncology program.

You can include the surgeons, mostly because their lives are so different and their technical training is much more extensive, but you can work closely with them, and I've been fortunate to be able to do that. But medical oncology and radiation, in my judgment, would be better off close together.

And your comment about me and ASCO, being the first president as a radiation oncologist, and I never call myself a radiation oncologist, at least not initially. I always call myself an oncologist. But I do, I agree and then describe what I do as radiation. But I agree with you, they have the best title-- clinical oncologists.

And why it occurred the way it occurred, I'm not sure. I know we started in radiology and medical oncology started in hematology. I mean, the real revolution, and leaving aside Dave Karnofsky and his work, the real changes occurred in acute leukemia. And the real founders of the specialty, Dave was surely one of them, but a great many of them were all hematologists, leukemia doctors, and it grew from there. It grew out of hematology. And a lot of major oncology papers were in Blood, the journal Blood before they were in JCO.

So that's the best I can do with it. Our big thing was to separate from diagnostic. Getting closer to medical oncology is much easier, because we have the same book. You said I wrote the textbook with Vince and Steve, and so I did. And that was very easy. We spoke the same languages. We saw the same things, not completely. I saw more head and neck. Vince saw more of the hematologic malignancies, but the rules were similar. It was no-- it was easy.

And I've heard Dr. Frei-- I trained with him when he was alive and obviously, Dr. DeVita talked about what it was like to give chemotherapy when they started. And how we really professionalized, in many ways, and split up giving chemotherapy, the different responsibilities.

What was it like with radiation oncology back 40 years ago? I mean, how did you-- the safety issues, were you all cognizant of the safety issues related to radiation at the time? How did you do your planning? What was that like?

Well, safety was-- Hiroshima made everybody know a lot. In fact, if anything, we were more conservative than we probably needed to be because of radioactivity being an evil and all the things that happened after '45 and at Hiroshima and Nagasaki experience. And so safety wasn't a problem that way.

But there were a lot of people in the field who were using the field, who are not radiation oncologists. Some of them were radiologists, diagnostic radiologists and did it part time. They had a cobalt unit, before that, just an orthovoltage, conventional energy, much less effective and more damaging.

And also gynecologists, and when I visited Memorial Hospital early on in my training, and the surgeons would send a prescription blank, a regular prescription dying down to the radiation therapist. And that's what they were, technicians, or often were.

And they may have differed with the prescription but only by being careful and discussing it with the surgeons and convincing them that some change should be. That's very different.

How was the planning done? How was the planning done?

The planning was fairly primitive. Well, most places had a physicist, usually a physicist, who did both diagnostic machines and conventional radiation oncology, and they were important in that department and those people subspecialized, too.

And in fact, when I came to Boston in 1968, Herb Abrams, who was the new chairman of radiology-- he's the one who chaired the committee that selected me-- but he and I jointly started a physics department. So it was still in diagnosis as well as therapy, but we realized that wasn't a good idea and separated.

So physics was evolving, but treatment planning before supervoltage, and even with supervoltage before multileaf collimators and a lot of the newer, what then were newer techniques, was reasonably rudimentary. When I did my residency, we did our own planning, and usually, it got checked by the physicist but not all the time.

It's a lot different now.

Yes, it is.

I want to turn this to an area that's more personal to me and that is your role, out of all the many contributions you've made to the field, your role in the field of breast-preserving therapy. I came in just as you and Jay Harris were really making that institutionalized.

Just for our listeners, what were the hurdles there? They must have been both personal and professional and technical. And did you ever doubt that this be successful in the long run? You must have had some second thoughts about getting into this.

Well, I have to back up. It was well before Jay, but it was at Yale. And apropos of how many-- going back to our previous question-- how few radiation oncologists there were. There was a club. Before there was a specialty, before there was a society, there was the American Club of Radiation Therapy. And all you had to do to belong to it was do radiation therapy without doing diagnostic radiology.

And I was in the low 200ths of the consecutive order of people who belonged to the specialty from its very inception at the turn of the century. So there were very few of us, and we knew each other extremely well and had these little conversing meetings.

And a number of people would talk about patients who had medical diseases which wouldn't allow them to have their breasts removed. They still had localized, apparently localized breast cancer, and the radiation therapist took care of them, and I did, too. I had these people.

And we also had the Europeans, especially the French, who were treating breast cancer with radiation. In fact, they were doing it with a fundamental difference with what we did from the beginning and they do now. And that is, they did it without removing the breast cancer, because they were doing it primarily for cosmetic reasons. And they felt that taking out the breast cancer might damage the cosmetic effect.

So we weren't alone. We weren't first. So I knew that other people had done it. Some people who did, Simon Kramer in Pennsylvania at Jefferson, Thomas Jefferson, did a great deal of it. And we did it, because we had a surgeon at Yale who was interested in sending patients.

You mentioned Jay, but really, before Jay, there was Lenny Prosnitz, who you may or may not know of, who was a long-time chairman at Duke. But Len was a medical oncologist at Yale, who was about, I don't know, three or four years behind me in training, and I was either a young assistant professor there at the time or a fellow, I can't remember which.

And he came over to me and said, you've got a nice life. You do interesting things. I'm not so crazy with this. Can I get into it? And Lenny, obviously, being trained in medical oncology, being a boarded internist was also interested in breast cancer. Because that's the one disease, even in the beginning that medicine, or one of the few diseases that medicine was interested in for the hormonal aspects of the disease.

So Lenny took over when I left with the surgeon Ira Goldenberg, and he kept it up. And when I went to Harvard, I had all those different hospitals, and I had a very good colleague there, who was the only radiation oncologist in those hospital complex, and he also treated some. So we continued to do it.

One of the nice things about Harvard at that time was, at least for this purpose, was we had this women's hospital, Boston Hospital for Women. And gynecologists in those days did everything for women and that included breast surgery. And those guys delivered their babies and when they got breast cancer, took care of them.

They weren't interventional. They were their private primary care docs, and they were much more sensitive to the cosmetic aspects and the self-image aspects of breast cancer surgery. And so they knew we did it, and they became a big source of suggesting patients and sending them to us.

Anyway, Marty, Marty Levine, the fellow I was talking about, and I developed a reasonable number of them. One of my residents, Eric Weber said, why don't you write a paper about this? I said, it's all done. The French have it. The Brits have it. Even the Canadians have it. He said, we don't. So I said all right.

We sent out the paper, and the first paper is with Eric and Marty and me, and it was a JAMA paper and that gets to another point.

What year was that?

I had to bully pulpit.

What year was that, the JAMA paper?

The JAMA paper? About '75-- '74, '75. And it made a big splash. And then Lenny and Simon Kramer and Luther Brady, two Philadelphia people who had big experience, and us put all of our stuff together. And Lenny brought it all together, and so there was another big paper. I think that one was in JCO, but maybe not. I can't remember.

And I think that's how it got started. And my issue with it and my involvement in it is, yes, pioneering the treatment in America. I don't claim to have pioneered it anywhere else. It wouldn't be true.

But what I did do is use the bully pulpit of being the Harvard professor, and I went everywhere and talked about it. And I took on the surgeons in a number of places and talked about it. And if I made a contribution to it, it was that.

I can remember being in an audience and hearing you talk about the Halstead theory and then the Fisher theory and what became known, in my opinion, as the Hellman theory, which is a combination of the two. That both local and systemic therapies make a difference, and the mortality rate of breast cancer has dropped by almost one-half over the last 30 years, and you should be proud of that.

Oh, I'm proud of it. I'm proud of it. But people don't do things in a vacuum. You build on people and on their doings.

Well, I want to be respectful of your time, if I can finish up here. I really just touched the surface of many of the contributions you've made. I wanted to talk a little bit about your role in getting radiation oncologists to think about what we now call translational science. But at the end here, what do you think are your greatest accomplishments? What do you think your legacy has been to the field? Do you think it's the science or your administration or your teaching and mentoring or all of those together? I think all of us would like to think about what our legacies would be.

Oh, I would say, it's an interesting and not an easy question, because I'm interested in all of those things. But I like to remind people that, and it's been commented on by others, I am one of the few people who maintained a practice of medicine, a real practice, all through being a dean. I always think of myself first as a doctor. And I am an investigator, and I am interested in research, both basic and clinical, and did both of them, but I'm a doctor first, that's number one.

Second to that, I was very involved in teaching and believe-- and that's why I became a dean and before that, started a department in Harvard and gave courses in oncology, and my residents are my greatest legacy, if you really want to know.

Nobody lives forever, and what you did in the lab and your patients, that passes, but your residents are your history. They continue it, and their residents continue it and so forth.

And just to end on a high note that you mention, is that the Karnofsky lecturer this year was one of my residents.

Yes, he was.

Of course, that's Ralph Weichselbaum.

He was. I actually chaired the selection committee, and I can't tell you how proud I was to stand up and introduce him. He did a wonderful job.

In addition to your own residents, I'm going to tell you, you're also passing this on to the medical oncology fellows who were hanging around the Farber in those days. And to this day, I tell patients I wear two hats. My first hat is to take care of them as I can with the knowledge I have today, and my second hat is to do research to make it better. But my first hat always wins, because Dr. Hellman said you're a doctor first. So there you go.

Well, I haven't changed on it. That's very nice to hear though.

OK. I think on that note, we'll end up. I had planned over about half an hour. We're just over that. So thank you very much, both from me, personally, and from those of us in the field and from our patients who have benefited. Dr. Hellman, you are truly a pioneer and a giant in our field. So thank you so much.

Well, you're very kind to say so.

For more original research, editorials, and review articles, please visit us online at jco.org. This production is copyrighted to the American Society of Clinical Oncology. Thank you for listening.

A physician finding balance when also being a patient. 

Read the related article "Searching For Evidence-Based Reassurance Where None Could Be Found" by Rozalina G. McCoy on JCO.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. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Cancer Stories-- The Art of Oncology Podcasts presents Giuliana Rancic reading the essay "Evidence-Based Reassurance Where None Could Be Found," by Rozalina McCoy, published April 20, 2018.

"Searching for Evidence-Based Reassurance Where None Could Be Found," Rozalina G McCoy. Quote, "I do not recommend any further scans unless you develop concerning symptoms now that you are in complete remission," end quote. I am a young woman with two preschool age children, a wonderful family, and a rewarding career. Three months ago, I completed a six-month course of chemotherapy for advanced Hodgkin's lymphoma.

I am also a physician and health services researcher, and I deeply believe in the theory and practice of high-value, cost-conscious care. In fact, my research focuses on improvement of the patient-centered and value of diabetes care and on reduction of overtesting and overtreatment that may lead, not only to wasted resources, but also to real patient harm. Throughout my career, I've been involved in state and institutional efforts to identify and reduce low-value services, consistent with the American Board of Internal Medicine Choosing Wisely Initiative, to promote and enable a conversation between patients and clinicians, to ultimately avoid unnecessary medical tests, treatments and procedures.

I also advocated for patients and clinicians to both play a role in fostering high-value, cost-conscious care through the use of shared decision-making to marry autonomy and paternalism and thus, ensure patient-centeredness without the undue burden of unsupported choice. That is why my visceral reaction to my oncologist recommendation not to perform routine surveillance scans after HL was so unexpected. I was surprised, confused, fearful, and even defiant. Could I really forego these tests?

The American Society of Hematology Choosing Wisely recommendation advises providers to limit surveillance computed tomography scans in asymptomatic patients following curative intent treatment for aggressive non HL lymphoma. In HL, the National Comprehensive Cancer Network Guidelines were not definitive in their recommendation for post-treatment surveillance of HL. But my oncologist felt strongly about foregoing CT and other routine imaging unless warranted by symptoms or signs of illness. She argued that routine imaging generates false positive findings, anxiety, and high costs, without definitive or meaningful survival benefit. Wearing my professional hat, I agreed.

But as the patient, I found myself anxious, afraid, and wanting more-- not because I was confident that doing more would help, but because doing something, anything, gave me the illusion that I had some semblance of control over what would happen to me. I was scared.

During the past nine months, I've been engaged, composed, and realistically optimistic as I underwent diagnosis and treatment, six months of ABVD, doxorubicin, bleomycin, vin-blastine, and dacarbazine chemotherapy for HL. However, when I emerged on the other side of treatment, instead of finding peace, I was more anxious than ever before. I longed for the comfort of a defined, structured and standardized treatment program, with its unwavering cycle of biweekly bloodwork, clinical evaluation, chemotherapy, and post-chemotherapy symptoms, no matter how incredibly unpleasant these were. I was, of course, thrilled to be done with treatment and elated to return to parts of my life that had been put on hold. However, I could not shake the fear that this reprieve was an illusion, that my lymphoma would come back, and that I would be blindsided by its unrelenting return.

As I sat in my oncologist's office, I understood something I should have realized a long time ago-- it's hard to practice what I preach. Although common sense and simple in the abstract, the application of value principles to individual circumstances was much harder. I was torn between following my oncologist's advice to do less, thereby pursuing high-value and cost-conscious care, and acquiescing to my yearning to do more.

Imaging seemed essential to early detection of recurrence, even if not consistently supported by the evidence. I was afraid that we would miss something, that my disease would progress, and that I would die. My oncologist taught me that such fear of recurrence is common. And I am grateful for her insights, as she patiently guided me through the confusion and fear and allowed me to find some comfort in our decision, in my own time and in my own way.

We have deliberately replayed our discussion about clinical, versus routine radiographic surveillance at every subsequent appointment, as I near the end of my first year with the diagnosis. It is a conversation that echoes in my mind every time I have a cold, feel tired, or ache from a long day with two young kids. I wonder if my symptoms are normal or if they herald the recurrence of lymphoma. Because the National Comprehensive Cancer Network guidelines are not prescriptive, and surveillance imaging is said to be reasonable, I invariably find myself wondering, what's the harm of just one more CT?

I know the harms. I saw my medical bills and know the cost that repeated imaging could add. I understand the anxiety of waiting for routine imaging, in essence, living from scan to scan. I had also experienced the downstream effects of false positive findings. Just two months earlier, a post chemotherapy positron emission tomography CT revealed a minimally concerning, but nonetheless positive new lymph node that had to be worked up and biopsied. In retrospect, this scan may have been low value. But my oncologist had relented to my request to get it done.

The biopsy came back benign. But I cannot forget the buildup of anxiety that led to the scan and the biopsy as I waited for the results that I had hoped would provide a temporary reprieve from my disease. I did not want to experience this again, yet I yearned for the affirmation of being cancer-free.

Living through these experiences led me to question and appreciate the best tenets of shared decision-making. Shared decision-making is predicted on the idea that clinical decisions should be reached through conversation and consensus between clinician and patient. In this dynamic conversation, clinicians contribute clinical expertise about the disease and treatment options, and patients provide expertise about their body, circumstances, goals for life, and expectations from care.

Yet, after my diagnosis, unlike a patient with chronic disease, I did not feel like an expert. I had not had the chance to learn my new post-cancer preferences or my capacity, and I did not know how they aligned with my treatment and surveillance options. My goals were to live every day the best I could, have no regrets, survive, and put these months behind me.

I did not know how surveillance imaging or the many other day-to-day decisions I have had to make throughout this journey mapped to these personal goals. Through open conversation about my fears and concerns, my oncologist and I have agreed on clinical followup visits and laboratory checkups for now, with the use of imaging if new or concerning symptoms develop. Through exploration of the reasons for wanting to do more, I was able to accept doing less. I still long for the additional reassurance that imaging offers, but I realize that no tests can provide complete reassurance. I hope that with time, I will grow to be more comfortable with uncertainty and less afraid of what may be hiding underneath my skin.

As a physician in clinical practice, I no longer have the same naive confidence in my ability to counsel patients about the waste of low-value tests, procedures, and treatments. Instead, I can empathize in a new and real way with their worries, hopes, and internal conflicts about treatment decisions. I hope that I can do for them what my oncologist continues to do for me-- practice evidence-based medicine, instill trust through compassion, and empower all patients to freely express their fears, uncertainties, and expectations, along with their goals, preferences, and values.

[MUSIC PLAYING]

I'm Lidia Schapira, your host for Cancer Stories-- the Art of Oncology Podcasts. Our guest today is Dr. Rozalina [? Gerbina ?] McCoy, author of the essay "Searching for Evidence-Based Reassurance Where None Could Be Found, to be published in Journal of Clinical Oncology. Dr. McCoy is an associate professor of medicine at the Division of Primary Care Internal Medicine and Division of Health Care Policy and Research at Mayo Clinic in Rochester. She's a primary care physician, endocrinologist, and health services researcher. Welcome to the program, Rozalina. It's a pleasure to have you, and we enjoyed reading your essay. Tell us a little bit about what led you to write this.

I think I am definitely not one to write pieces like this, being primarily a very data, big data driven researcher. But as I was coming back from one of my appointments after I finished treatments in chemotherapy, it struck me that I was really wanting the things that I have been telling my patients, my colleagues, the students I teach, not to do.

And at first, I thought it was ironic and interesting. And then I thought that it really was teaching me a lot about myself, about disease management, things that I thought I should have known before, but never encountered. And as I was speaking with my friends, they tried to make me feel better and say, well, this is not something that's obvious. It's something that I have unique insight into, having just gone through treatment, especially in the context of being a physician and a researcher.

So I wanted to share it, especially after I got similar feedback after teaching medical students about this. So I think a lot of people thought it was interesting and would help. So that the biggest reason I did it, I think, is really to help physicians understand what's going on in the minds of their patients, when they may be too differential to just say it themselves, and for patients to understand what they're going through and that it's very reasonable and very normal.

You're absolutely right. And we learned so much from-- and physicians who then are cast patients and have to learn what it's like to be on the other side. You talk about how you handled, in your professional life, the idea of making decisions that take into consideration cost and value. And then, when you as a cancer patient had to make these decisions with your oncologist, it felt very different. So tell us a little about that. How did you manage to switch between those two roles, and how did you manage to adapt all of a sudden to listening to the advice of your oncologist and perhaps even ignoring your gut, which was to do more?

Yeah, so I think I would be very kind to myself if I said that I have accepted this and come to terms with this. I'm not quite sure I have. This is something that every time I speak with my oncologist or even with my friends and colleagues, I think it's a battle that I fight every day. I still think that chronic disease management is very different from cancer care. But I understand that that's influenced by my own personal experiences and being very biased and subjective in this area.

And I think it's very important to incorporate this patient preference and now the overall context of the disease and the treatment when you make decisions. But what I realized is that it's not always fair to expect patients to be able to contribute that to the conversation. And I realize that shared decision-making is a lot harder than I thought it was, not just for the physician, but also for the patient.

I am still not completely thrilled, I think, with our plan of action. It helps that I trust my oncologist 100%. I think she really has the best intentions at heart. She is data-driven. She shares the data with me when I ask her to. So I trust that what she's doing is for the best. I don't like it.

I think it's very similar to my conversations with my little kids, who I hope know that what I'm telling them is the right thing to do, even if they don't like it, and they don't want to do it, so they just put up with it, because I say so. So I think I'm taking somewhat of the same approach with my oncologist.

It's funny and sweet and also difficult, of course, to think about all of these things. Here you are. You describe yourself. And as you lead into the assay as a mother, as a physician, health services researcher, and here you are. You bring all of this. And you're diagnosed with a lymphoma. You undergo the treatment. And then at the end, you had this longing, it would seem, for that structure, for wanting to continue to do things, because. It always feels better to do something.

And then you start to ask yourself, well, what is reasonable? So it's interesting to have you tell us a little bit about how emotionally complex this is, right? Maybe that's one of the things that happened to you, that all of a sudden, when you were feeling all of these things, it became harder to know what was right. Is that about what you were trying to convey?

Absolutely. I think I have been and continue to be torn about both wanting to have surveillance imaging and not wanting it, at the same time. I think I want the reassurance and the definitiveness that having a positive result, some, would offer. I want it to actually be the negative result that's going to stay with me, even though I know that's not true. And if I do get a negative result, it's probably not as negative as I want it to be, because things can change very quickly. So reassurance today means nothing a month from now.

And then, at the same time, I don't want to have to be doing the imaging, because of the anxiety leading up to it. And I had that-- what I had to have my PET scan after treatment. I know the likelihood of false positives and having to work those up. I think, deep down, I am still fighting the mini tantrum, as I call it, of I just wish I didn't have to deal with all of this-- which I know is not going to go anywhere.

So the hardest part, I think, is both wanting and not wanting this something at the same time, and not fully knowing how to process it yet. But knowing the fact that I trust my physician completely is the only reason, I think, I can get through this. Because I know that she will do what is best for me. I think that also, most of all, taught me the importance of having trust in your physician, having that good relationship, knowing that you can question what is recommended and trust the results, and not second-guessing yourself at the end.

Yes, oh, that's so important. So you mentioned this quest for reassurance. And it's in the title of your essay, that you're searching for reassurance. So if you're not going to find reassurance in the scans, where do you find it?

So my oncologist tells me that I'll find it with the passage of time as I learn my new body and I know what is normal and what isn't, and trusting that there is nothing bad hiding there, and that my cold and my flu is just that. And at the same time, I think that finding reassurance in every day-- none of us know what's going to happen in the future. And this way, I learn to really make the most of every single day, no matter what the future holds-- not being fatalistic or pessimistic, thinking that I will die tomorrow, but really having the confidence of knowing I am here now, and that's what really matters. And we'll see what tomorrow holds.

I wonder how this personal experience has affected the way you now discuss things with your patients. Do you have any anecdotes you can share with us?

Yeah, probably too many. With sharing things with my patients, especially, as a primary care physician, I really get to form a bond with the people I take care of. I think I can very personally connect with them about their fears as we are working up unknown symptoms, talking to patients about the fears that come with waiting for results or even waiting for scans to be scheduled, fear of the unknown, and the fear that they likely experience as they are receiving information or not receiving information from the specialist involved in their care.

I know that many of my patients with whom I've had this conversation, they've been very appreciative of the fact that I share this with them, so that they don't feel cowardly for being afraid or for wanting reassurance. And at the same time, they don't feel like they're not doing their all or their best if they don't want to be very aggressive. I know this is something we're taught to talk about with elderly patients and at the end of life, but not with younger patients. So being able to just tell them my story very briefly and telling them what I have felt, I think it allowed them to talk to me about their emotions, their fears, and be more OK with it.

Yeah, it sounds like it's been an experience that has led to probably even some emotional growth in some ways. That's what I hear from my patients and what I read in your words. When we talk about handling the uncertainty and these fears that cancer can shorten your life or affect you in so many different ways, we sometimes talk about handling or managing uncertainty. But I wonder if you can tell us, from the perspective of your lived experience, if you think it is possible to manage or handle it, and if so, how you would distill that wisdom for your colleagues who are dealing and trying to do their best to counsel their patients with cancer every day.

I mean, I found it very helpful for my oncologist to tell me that this is normal, and everyone feels that way. And the fact that I have doubts does not mean that it's necessarily going to happen. So what I mean by that is I thought that if I am worried that I have a recurrence, because I'm not feeling well, that that means something must be there. Because there's a reason why I'm worried. I'm not a worrier by nature. And so acknowledging the fact that this is a normal reaction and a normal emotion, it made me feel less anxious that there's something going on that I may be missing.

It's also reassuring to know that if there is something going on, it's very obvious. It's not something that's just going to sneak up on you. Because then it makes me be less anxious that I may be missing something. And I can put it out of my mind with a thought that, well, if it's going to be there, it's going to hit me in the face, and it's going to be obvious. So if nothing is hitting me in the face, it's OK.

And trying to put it out of mind, I think if we were to talk, hopefully, five years from now, I know I would have a lot more insights. I am at my one-year post-diagnosis anniversary now. So it's still very new. And I think a big part of coming to terms with it was writing this piece, to help me process what I'm feeling, why I'm feeling it, and rationalize it, in a way. So I think I would encourage patients not journal, but something. Talk to colleagues, friends, family, or even just write things down as a way to process what you're feeling. Because it's a lot, and I think it's hard to understand if you haven't got through it.

Yes, and we have learned that through journaling and talking, and even attending support groups, it gives people the opportunity to stay connected in some ways to normalize their experience, as well, and also to get and receive support. Well, I thank you for your sincerity. I sincerely hope that you write a piece for us several years from now and that we can have another chance to talk about lessons learned. Thank you so much, Rozalina, for being a part of this program. And thank you, all, for listening.

One doctor finds respite in an unusual situation.

Read the related article "A Pathologic Fascination With Humanity" on JCO.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 his 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.

Cancer Stories, The Art of Oncology podcast series presents Robert Bailey reading the essay, "A Pathologic Fascination with Humanity," written by Timothy Gilligan, published on February 1, 2018.

A Pathologic Fascination with Humanity, by Timothy Gilligan.

That was not what I expected to find myself feeling as I lay on a gurney, awaiting my first screening colonoscopy. I was in the pre-procedure area, and a nurse was coming to put an intravenous tube in my arm. Then I would be wheeled to the procedure room, where I would receive sedating medications. And then I would have a long, flexible tube explore my insides, bur I found myself not at all worried about that.

What I felt was a huge weight lifted from me. For the first time that I could remember, I was in a situation in which I could not get any work done, no iPhone email, no editing a book chapter or closing a patient record on the computer, no reading, no writing, no returning patient phone calls, emails, text messages or communications via the electronic health record, no pages asking me to change the date on someone's chemotherapy orders or to confirm that I really, truly did not want intravenous contrast with the scan I had ordered without contrast for a patient.

I felt I had permission to stop thinking, so I lay back, closed my eyes, and took a deep draught of this freedom from responsibility. I was particularly delighted when the gastroenterologist explained that the sedating drugs would impair my judgment so that I should not do anything important or potentially dangerous, such as driving, after the procedure.

Five hours to be completely unproductive, what a gift. It was the best part of my week.

I found myself wondering why I had let my life become like this, and I know I'm not alone. These are the components of modern medicine-- 100 emails a day, sometimes more, a cacophony of access points through which people make contact, an expectation to be on all the time, lest we leave a patient less than 100% satisfied and then face the dreaded drop in our patient satisfaction score.

If 89% of my patients report that I always communicate well, I'm in the top 10% of the nation. But if only 80% say I always and 20% say I usually communicate well, I drop into the bottom 50%. And God forbid I fall another 2% and only 78% say I always communicate well. I'll find myself in the bottom quartile of American physicians.

The good news I received this week is that none of my inpatients had returned the survey. I was safe. It was almost as good as being sedated for the colonoscopy.

One of the challenges in oncology is learning to help patients manage the burden of cancer without becoming overwhelmed ourselves. There are days when we give several different people life-altering bad news, and if we allow ourselves to be fully present, we sit with them holding and considering this huge weight and planning how to cope and move forward.

On top of this age-old responsibility, we are now rated and measured constantly. Patient satisfaction, relative value unit productivity, and expectations to remain the same workflow with fewer and fewer hands on deck. And looming over everything, will we meet the budget?

Is that why we went to medical school, to make budget? Or did we have some loftier goal? The holy grail when I was training was to find cures, now, it is balancing the books.

Don't get me wrong, I love medicine. It makes me sad when I hear colleagues say that they would advise their children not to choose a medical career. I don't feel that way. If mine decide they want to be physicians, I will encourage them to do so, and I will tell them to take several accounting classes in college to make sure that they are fully prepared.

With all these extrinsic pressures though, it makes you wonder what a career in medicine is all about. Our institution recently offered free access to an online webinar called Making Physicians Better, which featured horror stories of physicians acting unprofessionally. It advised faculty on how to teach professionalism.

I worry because a number of studies in the social science literature report that it is more effective to call attention to good rather than to bad behavior. Stories of bad behavior encourage people to think of bad behavior as normal. If others are doing it, I guess it's OK for me to, seems to be a human response.

I found myself reflecting on what inspired me to reach for a high level of professionalism. I remembered my residency program director coming into the emergency room of a patient of his showed up there so he could help guide the care. I remembered him making house calls on one of his patients, whom I also cared for.

I remembered my mentor and fellowship saying he wanted to hire oncologists who lay in bed at night reflecting on whether they had made the right decisions with their patients that day. I remembered my medical school mentor telling me stories of how he had risked his reputation with colleagues and supervisors to do what he thought was best for his patients.

I thought of the dedicated colleagues I now work with, who despite the stressors of the system, consistently put patients first. I remembered the warmth and kindness my infectious disease attending from New Zealand showed to patients dying of HIV/AIDS when I was a medical student.

These are the kinds of physicians I want to be. It is much easier to define a path if you navigate toward something desirable rather than away from something repugnant. But what is the antidote to all this pressure to see more patients, create more revenue, satisfy everyone, complete all the paperwork, make the budget?

I remembered the beginning, when I was applying to medical school. At one school, my first faculty interview was in the Nuclear Medicine Office in the basement of one of the medical buildings. I navigated my way to the office and knocked on the door. No one answered. I tried again. Five minutes later, the door opened, and the irate radiologist asked, where have you been?

He asked me why I wanted to be a physician. I told him that I thought medicine was intellectually fascinating and that I aspired to work to improve public health. Those are completely invalid reasons to become a doctor, he responded. Medicine is only interesting while you are learning it, he told me. Once you're in practice, it's just the same thing over and over again.

You become an expert, which means you already know what you need to know. And as for public health, he said I should go to the public health school instead. The public health official wants everyone vaccinated, he said, whereas the physician wants everyone except his patient vaccinated.

There was only one sound reason to go into medicine, he said. You should only become a doctor if you have a pathological fascination with humanity. He told me that my life as a doctor would be run by my patients and that the only thing that would keep me engaged would be if I were endlessly interested in people.

It is ironic that I heard this from a radiologist, and 25 years later, in the middle of my career, I realized that he was correct, not about everything, but about what sustains a career in medicine.

The day after my benzodiazepine and opioid-induced mini vacation in the colonoscopy suite, I was back in clinic, immersed in caring for people with cancer, hearing about their symptoms, their fears, their hobbies, their children, their vacations. I do have a pathologic fascination with humanity and that's what keeps me going.

I'm Lidia Schapira, your host for Cancer Stories, the Art of Oncology podcast. I want to welcome our guest for this podcast, Dr. Timothy Gilligan, associate professor of medicine at the Cleveland Clinic and author of the essay, "A Pathologic Fascination with Humanity," published in the February 1st issue of JCO. Welcome, Tim.

Thank you, Lidia. It's a pleasure to be here.

You have written an essay that really resonates with a lot of readers. It starts with this amazing scene, where you tell us you find peace on the gurney waiting for a colonoscopy. Tell us a little bit about what led you to write this and what you've heard from colleagues.

So I mean, it really was a striking experience, to be having this experience that most people kind of dread and instead, just to feel so relieved. When my iPhone was confiscated from me and I could no longer check my email and text people, I was surprised at just how freeing it was and to just be able to lie down and feel totally forgiven for being unproductive.

And I think for me, writing comes-- like, I relate to the whole idea of the muse. It's almost like giving birth, like there's something that needs to come out, and this felt like a story that I needed to tell.

When I first wrote it, I actually was reluctant to publish it, because I thought, this is just personal about me. No one else is going to care about it. But a couple of my friends said, no, you really should submit it, so I did.

And we are so lucky that you did. So you have some wonderful deep reflections in there that I wanted to ask you a little bit about, and they have to do with how complicated our lives are professionally, how we are judged or valued or evaluated by some very, it sounds like bizarre mechanisms. Tell us a little bit about that.

So yeah, I think, my sense for physicians is that we tend to be self-motivated people. We've pushed ourselves our whole lives to get into a good college, to get into a good medical school, to get through our good residency program and to get through our training and to impress our patients and our peers.

And so for instance, for me, when I went to medical school, I really preferred going to schools that didn't grade, because I felt like I push myself hard enough without this external metric constantly being applied to me. And there are a number of medical schools that don't grade in the early years, it turns out, as many of our listeners will know.

And now, I found myself in this context, and a lot of my colleagues obviously, too, where we're constantly being measured and judged and told that we're inadequate if we don't meet certain metrical standards that are being set for us. And it's not that I object to the idea of measurement. I'm all about quality, and it's very hard to improve if you don't measure how you're doing, but I think the psychological experience of constantly being rated, in some levels, is kind of degrading.

Like, if everything you do, there's someone standing next to you saying, on a scale of one to 10, you just did a seven. You just did an eight. It's a little infantilizing and it doesn't, I think, make physicians feel like they're getting the respect of people who work hard and don't need to constantly be reminded.

And so it's a delicate thing. Some of the metrics are important, but it's created in an environment that, I think, is degrading at some level for doctors, and it contributes to burnout, which is something I'm very worried about.

So on a more serious note, help me understand what you think went wrong along the way. People started to introduce these metrics for some good reasons, as you say, to help people improve, perhaps, but something's gone wrong. What do you think it is?

I think it's complicated, and I'm not inclined to blame other people for my problems. So in some sense, I feel like we, in medicine, bear some responsibility for not maybe taking responsibility for fixing our own shortcomings and that's part of the reason that we now have a bunch of external people doing it for us.

But the rise of administrators-- I've seen graphs that look at the number of clinicians versus the number of administrators in health care, and health care is increasingly dominated by non-clinical people, it feels like. And they're trying to come in and measure our quality and help us improve quality and it's hard to do that without measuring everything that we're doing, but it's not being done in a way that takes into account the day-to-day day experience, I think, of the people practicing.

So I think, for me, one answer is, as physicians, we need to play a front and center role in quality improvement and patient experience and clinician experience and really try to own our environment and own responsibility for it, because if we don't do it ourselves, then other people will do it for us, and the way they do it is often not very palatable for us.

I know you've been very interested and a champion, really, in promoting the teaching of communication skills. Do you incorporate some of this into your teaching? Do you have your students or your peers, who are going through these workshops or trainings, actually think about how they're viewed and how they're evaluated?

It's interesting, to some extent, because when we-- our hospital, it's actually been mandated that all the physicians go through communication training. And so we've tried to be very thoughtful about making it an experience that would be a good experience for them, something they would enjoy and find helpful and meaningful and relevant.

And they often show up very annoyed, thinking that they're only being told they have to work on communication skills because their scores aren't high enough. So we actually have tried to dispel that. And one thing that we did is we really focus on having clinicians teach clinicians, so that the people teaching skills were people who were also seeing patients and knew what it was like to have a backlog of patients and trying to catch up and not being able to spend all the time in the world and having to document.

And so it felt to them like, I think, the people teaching knew what this was like. But it was a hurdle we had to get over to get people to stop talking about the scores and the metrics, because they were frustrated by that. And I think that if you focus on the metrics, that's not the best path towards improving performance all the time.

In your essay, you take the reader back to the sense of needing to reconnect with your sense of vocation, I think. What comes through is a real optimism and sort of this interest and intellectual and total engagement in being curious about who the patient is. Tell us a little bit about how that's resonated with readers and with colleagues.

Yeah, I've been heartened at how many lovely emails I've gotten from people around the country. My fellowship program director wrote me and old friends where I trained wrote me and people I've ever met before have, saying that it resonated with them.

And a couple of lines that stood out for people-- I think one thing I've heard a lot is what I wrote about, it's easier to improve if you're navigating towards something you desire rather than away from something repugnant. So it's been helpful to get that feedback.

I think, for me, what ultimately recharges our batteries, or my batteries anyway, in medicine is the human connection with the patient rather than some scientific fascination with the illness. And I think we can get separated from that. There are a lot of distractions, charting, and these metrics and all that stuff.

I think that when we can help people reconnect with just the meaning of the relationship with the individual person who's fighting an illness and any loved ones who they have with them, that that's ultimately where we get the most satisfaction at the end of the day.

I recently had lunch with a medical school classmate, who I thought put this very well. He said to me that he had been doing a primarily administrative job and had gone back to clinical work. And one of the reasons he was really happy about that decision is he said when he went to bed at night, he felt like he'd done something worth doing, I think, those human moments, working one-on-one with people.

So with all the wisdom and lessons learned, how can we find a little bit of that warm sense of vocation and peace without having to lie on a gurney waiting for a procedure, feeling physically drained?

I had a number of colleagues write me that I needed to find a better way to relax. That if I view going to a colonoscopy as going to the spa, that I need to revisit my life. I think it's hard. I think all of us who sign up for clinical careers know it's going to be long hours and hard work.

I think the couple of things that I find-- well, I think there are three things that I find helpful, so one is to talk to colleagues. And because I think, one of the wonderful things about medicine, I find, is the camaraderie and the teamwork. And to make time to talk about our experience with each other and what's working for us and what's frustrating, I think in those conversations and connections, we have opportunities to recharge our batteries.

I run the training program where I work in the fellowship of hematology oncology, and I stress to our fellows that I think to survive a career in medicine, you need that something outside of medicine that you love, whether it's music or a sport or something to do with your family or something that's really for you. For me, I'm a fanatical tennis player, but it can be a lot of different things for different people. I think that's really important to get your head out of the medical space for a while.

And then also, with patients, I think we get trapped in this problem-solving mindset, where we look at the patient as a list of problems that we need to address. And that's, I think, as not as rewarding and a way to spend our day. If we can see them as a human being and connect with them as a person and learn about them as an individual, take a little time to find out who they are when they're not sick and what's going on in their life, I think that also we find meaning and depth in those connections and that helps sustain us, as well.

So those are the three things that I'm hopeful about. I'm hopeful that the electronic medical records will get better. They're a major source of burnout that there's not an obvious fix for that right now. But I think that over time, I'm optimistic that the people who design these things will get better at it.

And your love for the profession and for humanity really, really sparkled in this essay. So the other comment I just had listening to you is how important it is to create a community of colleagues. And we hope in a way, that through these essays and these podcasts, we also will stimulate dialogue and connection, perhaps even among people who don't know themselves but who read and have access to the same wonderful material.

So thanks, Tim, for all the work you do every day, and thank you very much for writing and sending that beautiful essay. Thank you, and that will end this podcast.

Thank you.

How a puzzle table helped both an oncologist and her patient.

Read the related article "The Puzzle Table" by Jennifer Lycette on JCO.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. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Cancer Stories-- The Art of Oncology podcast presents Pamela Hayden, reading the essay "The Puzzle Table" by Jennifer Lycette, published December 1, 2017.

The puzzle table sits off to one side of the infusion room. The chairs are now vacant. And the flat, white expanse of the table shows through the jagged outline of the emerging pattern.

I think of her, my patient, who will never sit there again. She would hurry to claim the table as soon as I had finished her history and physical each week, a shy smile on her face. The nurses knew to look for her there rather than waiting in the exam room when it was time to start her intravenous line.

On her treatment days, any time I passed through the infusion room, I would see her absorbed in the study of the puzzle before her, with her intravenous pole as her companion. The plastic catheter snaking down from the medication bag to her body did not get in her way.

She would look happy and relaxed, not like she looked when we were in the exam room, tense and fearful. I would nod to myself when I saw her reach across the table and pick up a tiny piece. The peripheral neuropathy was not so advanced that her fingertips could not grasp it.

The puzzle table was popular in our infusion room. It has developed an importance that was brought to our attention repeatedly when we held patient focus groups to help plan the space for our new facility.

What about the puzzle table? Where is it going to go? There is going to be a puzzle table, isn't there? Groups of patients and advocates crowded around the blueprints to determine the perfect spot for the puzzle table in its new home.

I didn't appreciate the significance of the puzzle table until I found myself one Saturday sitting with my dad in the waiting room of the cardiology procedure unit. My mom had just been whisked back for an emergency pacemaker. Being a weekend, the waiting room was empty, other than a lone soul curled up on a couch facing the wall on the far side of the room, their form obscured by a blanket.

The physician side of me told myself I had nothing to worry about. Pacemakers were routine. And this tertiary hospital placed thousands of them in a year. The daughter's side of me worried anyway.

I looked at my dad sitting in the chair next to me, a stoic air around him. The emptiness of the room, with its deserted sofas, tables, and chairs, furthered a sense of apprehension.

I wanted to say something to comfort him. But I dismissed each sentence that came to my mind, not wanting to resort to platitudes. The silence felt too heavy to lift with words.

My eyes wandered around the room for inspiration and landed on a stack of puzzles. I thought of my patient. I think I'm going to start a puzzle, I said. Want to help?

After a few minutes, he joined me. And for the next several hours, we worked mostly in silence. I can't remember the picture on the puzzle. But I can remember that as we worked, the tension and worry gradually lessened.

After the two-hour mark, I didn't know if my dad had noticed the time had passed the point at which the cardiologist had told us the procedure would be finished. My mind started to run through various complications that I could not keep out of my too-vivid doctor's imagination.

But each time one of these catastrophic, albeit unlikely, visions made its way into my consciousness-- ventricular fibrillation, arterial rupture, anaphylactic reactions to anesthesia-- I would focus on the puzzle in front of me. And I would be able to dismiss it from the front of my mind.

We were both engrossed in the puzzle when the cardiologist suddenly appeared, walking across the room to us. My heart rate accelerated at the same time as I stopped breathing. I mentally willed him to tell us that all was fine but braced myself for the possibility of bad news. We were fortunate. All had gone well.

Alas, in oncology, we do not yet have implantable devices to take over the regulation of what goes wrong in a cancer cell. It wasn't too long after my experience on the other side of the waiting room doors that I found myself meeting with my patient's family. And I had to tell them all was not well.

My patient is gone now. But I cannot walk by the puzzle table without remembering her. I am grateful to have this memory of her.

I think I understand now why she always rushed to start a puzzle. I think, perhaps, it allowed her to pass the time in the infusion room without her mind running away with thoughts of the chemotherapy dripping into her veins and the prognosis of her cancer, to take things one minute at a time, one second at a time, one puzzle piece at a time, to live in the present moment and not the fear of the next moment.

As I see other patients and family sitting there, whether chatting and working in groups or sitting alone in comfortable silence, I still see her, too. I notice at the end of the day when the infusion room is empty that the puzzle is never completed. I understand now that the puzzle is not there to be finished. It serves just by being present.

I think about the puzzles we take on each day as oncologists. There are some cancers with curative chemotherapy regimens. We know what those puzzles look like when they are solved and how to solve them.

Other times, we are faced with puzzles that no one has yet been able to solve or even puzzles that have never been seen before. There are many pieces that appear similar but have slight variations.

Each one looks like it could be a potential fit. But until we decide on a piece and try it, whether or not it will fit will not become clear. If it doesn't fit, we take the piece out, set it aside, and try another.

Sometimes we get lucky, finding a series of pieces that fit perfectly together. But then, just when we think we can see a glimmer of the completed picture, we either run out of pieces or cannot find another fit.

My patient had done well through many lines of palliative chemotherapy, with few complications over a span of years. But I knew we were running out of pieces. And I knew that she knew we were running out of pieces. But she only ever wanted to focus on the piece at hand.

We had discussed what would happen when the time came that we ran out of pieces, but she never wanted to dwell on it. I don't think this was denial. I think it was courage-- the ordinary yet extraordinary bravery of the quiet and steady reaching for the next piece.

At the end of the day, the infusion room empties of patients and staff. And the unfinished puzzle reminds me of uncertainties and possibilities. I walk over and search for one more piece to click into place before turning out the lights.

[MUSIC PLAYING]

I'm Lidia Schapira, editorial consultant for JCO's Art of Oncology and the host of this podcast. With me today is Dr. Jennifer Lycette, who is an assistant professor at the Knight Cancer Institute at the Oregon Health and Science University and the medical director of oncology services at Columbia Memorial Hospital. Dr. Lycette is the author of "The Puzzle Table," published in the December 1 issue of JCO. Jennifer, welcome to our program.

Thank you for having me.

It's a pleasure. We really enjoyed "The Puzzle Table," and the reviewers also loved it. So tell us a little bit about the inspiration for this wonderful essay.

Well, I think it was a combination of how this patient affected me and remembering her in a moment that was very personal as I wrote about with dealing with the illness-- not a cancer illness, but a medical situation with my family member, my mother. And the story kind of wrote itself in my mind, I guess, is sometimes how stories come to me. And after a time, I got to a point where I wanted to put it to paper.

It's such a wonderful concept-- the idea that the story wrote itself. And there came a point where it just needed to gush out and find paper or screen or whatever it is these days we do with our stories.

So the story centers around the puzzle table, which is actually a piece of furniture that sits in your infusion unit or in the waiting room and seems to be sort of a focal point for patients to gather and pass time. Tell us a little bit about this particular patient that you honor and remember and how she used the puzzle table.

Well, she was a very quiet, shy woman. And she was really known by all the staff for her love of the puzzle table. And we would even joke about how if we didn't see her in the waiting room, we knew we could find her at the puzzle table.

And it wasn't something I really thought about for her until, again, I was in this other moment with my family and how the puzzle affected us. And so it just really caused me to reflect on why it was such an important part of her day in the infusion room and became, in a way, a special memory of her. Because I think for all of our staff, including myself, we have a fond memory that when we see the puzzle, we can't help but remember her.

That's a lovely image. And so let's talk a little bit about your personal experience you relayed in this reflection that you and your dad found yourselves in a waiting room, waiting for your mom to have a cardiology procedure. And for those hours you spent, you also gathered around a puzzle. And that helped you pass the time. Tell us a little bit about that.

Sure. So my father is not in the medical field at all. And as we were waiting for my mother to finish with this procedure, I could sense how apprehensive he was. And I could also sense that it didn't matter what I would say. Of course, he was going to continue to feel that way until it was finished.

And it was a weekend, so the area was completely deserted. And so as I wrote about it, I was kind of glancing around the room in desperation of what to do in this moment. And I saw they had puzzles out. And I just said to my dad, hey, let's do a puzzle.

And while we were doing that, in my mind, actually, I was making this connection with my patients. And so it was, again, just one of those moments I think that happens to us a lot in practice where we have our own separate lives. But at the same time, I think our experiences are always with us at the same time.

Yes. I think we tend to talk about dividing lines and boundaries. But, in fact, all of these experiences make up who we are. And we don't dissociate. We are one person.

So let's reflect a little bit more about how you compare all of these pieces of the puzzle as you're putting together a patient's history and deciding on treatment as an oncologist and also how the pieces of the puzzle, as you say, somehow never are solved, it seems, until time goes by. Tell us a little bit more about what you were thinking when you were comparing the pieces of the puzzles to how we solve the mysteries of the care that each patient receives.

It's as you say. As I was writing the piece, it struck me that the puzzle was actually a very good metaphor for what we do in oncology. And for this particular patient with metastatic breast cancer, of course, we have many lines of therapy in the metastatic setting.

But we don't necessarily have head-to-head comparisons of which one to choose for each patient. So we're very much using our experience and knowledge of toxicity and knowledge of the patients. And sometimes, we try one thing, and it doesn't work. And we move on to something else.

And in metastatic breast cancer, of course, we often have more time to do that than with other cancers. But it struck me that often, it's as if we're putting a puzzle together.

But at the same time, in the back of our minds, we have the knowledge that at any time, we know what piece might not fit. Or we're on a time clock, if you will, but we don't know when it's going to end. And so that metaphor was what I was trying to get across in the piece.

Yes, and you did that so successfully. And then the other aspect of the writing that is, to me, so beautiful is that you help us as readers understand that focusing on each piece of the puzzle one piece at a time has an enormous calming effect on the person. Was that your intention?

Yes. And I'm glad to hear it came across in that way. Because especially with this woman, she, as I wrote about, wasn't someone who every visit wanted to talk about prognosis or dwell on prognosis. But I felt very sure that she understood.

And we talk a lot about mindfulness. And we have a wonderful social worker in our clinic who tries to help us as staff with doing that for ourselves but also for our patients to help as a coping skill. And it struck me that that's what the puzzle was, I think, for my patient-- was in some ways, a mindfulness tool. And I didn't really make that association until I was using that tool myself with my dad.

That's so interesting. And also in your writing, you honor the patient and talk about the fact that what she displayed was a form of bravery and courage and that it also shows just how well, I think-- if I may just tell you the thoughts that I had as I was reading this-- shows that she knew herself. And she was more comfortable moving those pieces around and being busy and perhaps really dreaded the moments where there would be dialogue or conversation.

Or she felt, perhaps, even she would be forced to speak about a future that looked not only uncertain but grim as time passed. Does that resonate with you?

Yes, it does. I think that's exactly what I was trying to get across in how I would observe that she was really a different person in the infusion room. If I saw her across the room, she would be very relaxed, doing the puzzle, chatting with the nurses. But in the exam room, she was very tense and fearful.

So it was a very interesting difference in the way I would observe her. And it was, I think, very helpful to be able to see her in that other situation to know that that was her actual self. And what I was seeing was just a very small moment. And, of course, we often only get very small moments with our patients in the exam room.

Yes. This comes across so clearly. Well, the piece is really beautiful and just beautifully constructed. It starts with the puzzle table. And then you guide the readers through all of this reflection of the patient story and your story and your connection through puzzle solving to the lived experience of patients who need to find ways of going from one anxious moment to the next.

And then you finish with the scene, again, almost like a theatrical or choreographed scene, where you turn the lights off. And you put one final piece of the puzzle into place before turning the lights off and going home.

It's really a beautiful piece, Jennifer. And I'm so grateful that you sent it to us. And I hope the readers enjoy it as much as I did. Do you have any final message or words for those who are listening?

Well, first of all, thank you. And I'm very grateful to have the opportunity to share my writing. And I think in terms of final words, I would go back to what you said about how we try to all set boundaries to help ourselves but that we are one person.

And I think that for me, I would share that I have been practicing in a small rural community now for a little over four years. And I've actually found that opening myself up to some of that overlap has actually been a very helpful thing as an oncologist and a person. And so I don't think we always have to have such rigid boundaries. And again, I just thank you for letting me share my writing through JCO.

Thank you, Jennifer. That was Jennifer Lycette talking about her essay "The Puzzle Table." Join me next time for another conversation about the stories and the art of oncology.

A doctor’s perspective on how love can affect decision making.

Read the related article "Love in the Time of Cancer" by Lawrence Einhorn on JCO.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, experiences, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as a ASCO endorsement.

Cancer Stories, the Art of Oncology podcast present Alina Cho reading the essay "Love in the Time of Cancer" by Lawrence Einhorn, published October 20, 2017.

"As a clinical oncologist for over 40 years, I have often wondered about the factors that drive patients to battle seemingly insurmountable odds with hope and determination. After all these years, I turn to love in all its many forms as a compelling force helping our patients combat the uncertainties associated with a cancer diagnosis. Love cannot conquer all. That we know only too well. But it can provide comfort in troubling and unpredictable times. And propel our patients ever forward against a terrible disease they face.

The Maudlin sentimentality of some works of fiction pales in comparison with the courage and resilience that characterize our patients. As I move toward the end of my career, I more fully realize that it is love that lies behind the resilience of so many of our patients. Much like Nobel laureate Gabriel Garcia Marquez described in his novel, Love In The Time Of Cholera, in which he demonstrated the power of devotion and enduring love during difficult times over a lifetime of his protagonist.

Illness as Metaphor was a concept espoused in a series of essays by Susan Sontag. A paragraph from her work is very moving to me. Illness is the night side of life. A more onerous citizenship. Everyone who is born holds dual citizenship in the kingdom of the well and the kingdom of the sick. Although we prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

It is difficult to navigate that night journey as a single passenger. Love, in its many manifestations, helps provide solace and a sense of peace. Not just for patients, but also family members. We bear daily witness as oncologists to the power of love in the time of cancer.

WG was 23 years old when he was diagnosed with metastatic testis cancer. After complaining of pain in his left testis, his wife insisted he seek medical care. But by the time of the diagnosis, his disease had spread to the retroperitoneal nodes. He was treated with bleomycin, etoposide, and cisplatin. And achieved a serological complete remission. A post chemotherapy retroperitoneal lymph node dissection revealed teratoma.

His tolerance of chemotherapy and surgery was aided by the constant presence of his wife, who appeared far more concerned than WG. Unfortunately, seven years later, he had an asymptomatic late relapse manifested initially by an elevation of his serum alpha-fetoprotein level. During the ensuing seven years, he endured frequent attempts at surgical extirpation with each operation causing more physical and emotional distress.

Several chemotherapy regimens produced temporary reductions in his alpha-fetoprotein level. His wife was always there for him in a very close and loving relationship. Finally, he reached a point where I had to tell him that further treatment would produce far more harm than benefit. WG was never enthusiastic about undergoing increasingly toxic treatments at the best of times. However, after the discussion regarding futile and harmful treatment, he asked about any type of therapy no matter the adverse effects. His rationale was that even if it could provide one more day to be with his wife he was willing to endure further toxicity.

Sadly, we had truly exhausted all options. Shortly thereafter, he died at home with his wife as his constant comfort at his bedside.

ES was 16 years old when he was diagnosed with metastatic testicular cancer. He was treated with bleomycin, etoposide, and cisplatin on a pediatric oncology protocol. And achieved a brief partial remission followed by a rapid progression. He was then referred to Indiana University for salvage chemotherapy. He was a candidate for high dose chemotherapy with peripheral blood stem cell transplantation. His probability for cure was at best 20%.

And in my opinion, this was his only curative option. His college educated parents accompanied him for his initial outpatient appointment, and decided to take him to Mexico for alternative therapy. Thereby eliminating any chance for a cure. His parents loved ES just as deeply as WG loved his wife. We oncologists try to provide wise counsel and comfort on the basis of data, information, and evidence based medicine. Ultimate decisions cannot be mandated however. And even the best evidence for or against a particular treatment may not stand up to the power of love in its many varied expressions.

LP was 32 years old when she was diagnosed with stage 3B T4 N0 adenocarcinoma of the lung. She was a never smoker, and her disease presumably was the result of mantle radiotherapy she received at age 10 years for childhood Hodgkin's disease. She sustained injury to her left phrenic nerve resulting in an elevated hemi-diaphragm as a post operative complication of her staging laparotomy. Her subsequent lung cancer was in the opposite right lung. She was treated at the time of diagnosis with cisplatin and gemcitabine with stable disease.

Upon progression, she received docetaxel as a second line chemotherapy. She was subsequently referred to Indiana University, and evaluated by our thoracic surgeon. He described a resection that would be high risk and low yield. She was informed that her complicated condition of stage 3B lung cancer coupled with a paralyzed left phrenic nerve with elevated and hemi-diaphragm meant she was at significant risk of becoming ventilator dependent. And that there was a real probability of post-operative mortality.

She looked him in the eye, and stated that she had two young children. And if there was any chance for meaningful survival, she was willing to take the risk. As predicted, she required ventilator support for two weeks. But fully recovered. Two years later, during a routine office visit, she had tears in her eyes, and I had a lump in my throat, as she declared she never thought she would be alive to celebrate this day as both of her children had now graduated from kindergarten.

She is still alive 15 years later, and still finds joy in family milestones with her husband and children. Over this time, she has undergone a craniotomy for resection of metastatic lung cancer as well as the completion pneumonectomy. She has not responded to any subsequent systemic therapies. Last year, she underwent laparoscopic nephrectomy for simultaneous renal cell carcinoma with a focus of metastatic adenocarcinoma of the lungs. Her love of life and family had provided her the grace and courage to continue the fight.

Tragically, as I write these words, there are no further systemic or surgical options. And she was recently enrolled in hospice 15 years after the diagnosis of inoperable stage 3B lung cancer. There have been dramatic changes in the science and practice of medicine. And the chaos of a typical clinical day often detracts from the traditional doctor patient relationship.

Despite the chaos, we still learn to be humble and are continually inspired by our patients. We can mentor our students, residents, and fellows about medical facts. But the ability to convey empathy and compassion is just as vital as the knowledge of complicated pathways. Our patients deserve our knowledge and experience. But this only goes so far without love to guide them in their decision making. To foster and understand the factors that keep our patients living in the face of terminal disease, we need to endeavor to have a better understanding of love in the time of cancer."

I'm Lidia Shapiro, editorial consultant for JPO's Art of Oncolgy. And the host of this podcast. With me today, is Dr. Larry Einhorn. Past ASCO president, professor of medicine at Indiana University, and one of the giants in the world of cancer medicine. Dr. Einhorn is the author "Love in the Time of Cancer." Larry, welcome to our program.

Thank you. It's a pleasure to be here.

Great to have you. Before we get started talking about your beautiful essay, let me ask you a more general question. I usually ask our writers to tell us what they're currently reading. What would I find on your night table?

Well, quite a few different things. I've taken to several different authors that I like. One of them is Tom Perrotta, whose newest book just came out, Mrs. Fletcher, that I just downloaded. And I'm trying to think. What else I've read recently? Something that is very strange is a book on what's called counter-factual. It's called What If? Talks about various episodes that happen in the world's history, and what would happen if something different happened.

And this is probably very applicable with the quote unquote fake news thing that's going on with alternative facts. So it's kind of very interesting looking at these type of things. But most of what I read is fiction. And I like science fiction. And I like well-written detective and mystery stories.

Sounds terrific. Sounds like you're a well-rounded reader.

Yeah, and I get the last book that I finished was All the Light That You Cannot See. And I'm trying to remember who the author is, and I can't remember because it's such a beautifully written book.

Yeah, it's Doerr. And it's a beautiful book. I enjoyed that one as well. And do you read about illness as well? You based this story on Gabriel Garcia Marquez's beautiful story Love In The Time of Cholera. It sounds like you read about illness. And you have a very broad taste in fiction and in the literature.

Well, I like well written literature. And I rarely read about medical things. But Gabriel Garcia Marquez has such a beautiful way with language. Not just the magical realism that he does, but just language as a whole. It just is like listening to a symphony reading his literature. And I had read Love In The Time Of Cholera a long time ago. I don't even remember the year that it came out. And he's just such an amazing author.

Tell us a little bit about how you went from Love in the Time of Cholera to thinking about "Love in the Time of Cancer." Was there a clinical scenario that moved you deeply? Or is this sort of what we're reading here is this the culmination of four years of oncology and your distilled wisdom?

Well, I think that the idea in some of the vignettes I had in Love in the Time of Cholera-- "Love in the Time of Cancer-- sorry, is love is such a powerful force. And it drives so many of our emotions, and directs us into things that we do and do not do. Some foolish and some wise. And I actually was struck most by my young testicular cancer patient who was educated, his parents were educated. And despite lengthy conversations with them, they opted not to pursue what could potentially be a curative therapy.

And I had no question in my mind about the love that their parents had for their son. Just as I had no question in my mind with the other testicular cancer patient that I highlighted who somewhat semi reluctantly went through treatment, after treatment, after treatment with more and more toxicity. And when finally it was time to say that there was no more treatment that could be beneficial for him, he looked at me and I practically had tears in my eyes as he said, if you can just do something that would let me spend one more day with my wife, I would take any type of toxicity. And that type of love is just amazing after all the things that he's been through. It's like going through this whole epidemic of cholera in Love in the Time of Cholera. And this whole time series of the two protagonists in Gabriel Marquez's very beautiful novel.

What I'm hearing you say, and what I took away from the essay, is that we need to respect those bonds of love even if they drive people to make decisions that we may not agree with. Is that correct?

Absolutely. Absolutely. We provide information and knowledge. But this is ultimately it's not-- this whole TV series Father Knows Best, it's not a doctor knows best. These are shared very difficult conversations and decisions. And they're shared with the patient and the family. And any of us know who takes care of patients that we take care of families not just patients.

You know, leaders and listeners may be curious to learn more about the pragmatic elements behind your career taking care of patients. So when it comes to these very poignant conversations and advice, how did you earn this wisdom? Did it come to you in stages? Can tell it's a little of that?

Well, there really is no substitute for experience. And I think all of us are uncomfortable with these conversations when we're house staff, and fellows, and junior faculty members. And you sort of find your own comfort level. And I think what I've come to learn because I deal with two very different diseases, I deal with young men with testicular cancer where the goal and the achievable goal is cure. And I also deal with lung cancer where most of our metastatic lung cancer patients as you know, are going to live longer and live more comfortably. But there are very few five year survivors with lung cancer.

And you sort of learn along the trajectory of an illness that for most people hope is better than despair. And to offer something meaningful rather than to offer something that is just injecting something into their veins so that you can get to the next patient in the office is what you try to do. You develop humility. You develop empathy. You develop compassion. And I don't think that these are innate traits in any of us. I think we learn this through our experience with patients. And it's an ennobling profession. Medicine is a great profession. And I think oncologists have a very unique relationship with their patients. Arguably very different than any other profession.

And I think you also realize that we all have pain and suffering. We all don't have cancer. But we all need help in going through these difficult phases of our life. And pain and suffering is part of the human condition. It's part of all major religions. And what you try to do is help steer patients along the right way to make a right decision, to be armed with facts, and to treat them with respect, and humility, and compassion as I mentioned. The long answer to a short question.

And while your on a roll here, let me ask you, how do you actually do this with your trainees? With your fellows?

Sure. So I would have to admit that it's becoming more difficult with the time constraints that all of us face. But when I have medical students, residents, and fellows in my clinic, which I always do, they will go in and do the initial history and physical examination.

And I try as best as possible to have them come with me when we're having a meaningful conversation. If it's someone who is just coming in for annual follow up with testis cancer, obviously, that's not necessary. But any time that we see a new patient and go over what the goals of therapy are going to be, or any time that we have someone who has had further progressive disease, and we have to look at what the next step if any steps should be, we try to have these young physicians, really not that any of us do it perfectly, but just have a concept of how we discuss things. And at the end of the conversation, after I'm outside the patient's room, I ask them if they have any questions about that conversation. And any suggestion about things that could have been said or should not have been said.

Larry, where and how did you find support or perhaps is it in love that you find the strength to renew yourself and your reservoir of compassion?

Well, I've been married for 52 years. I have to get my own mathematics over here. And have I been very fortunate with my wife, Claudette. And she is a source of strength for myself. And I always tell her that when I come home on a Monday or Tuesday, that's my testicular cancer clinics, and you really feel energized. And when you're seeing lung cancer patients all day Wednesday, again, they're really amazing advances being made in lung cancer in the last several years, but it's tell a very different type of clinic. And you try not to bring your work home every day. But it's nice to have family discussions and someone who's not in the medical field. Many physicians have their spouses who are also physicians or oncologists. And it's probably a different type of dinner table conversation.

Well, maybe the take home from this interview is that physicians should look for non physician spouses as life partners.

Who are understanding. Well, my wife said something that's very true when we have some of these conversations. She says that's a serious condition like cancer can bring out the best or the worst in a relationship. And we've seen both. We've seen couples who are divorced, and the husband or wife will go back to their spouse in their last couple of weeks or last couple of months of life to provide them comfort. And we also see patients who are in a relationship with someone, and the spouse can't bear what the person is going through. The idea that I take you in illness and health and through good times and bad times, and has led to separation and divorce sometimes.

Yes. This is a beautiful meditation. Love in its many manifestations and how it helps to provide solace and peace. And also this conversation I think helps us understand that we too need love and sources of comfort and peace. Perhaps this is part of a larger conversation on resilience. And how patients and families overcome the challenge of a serious life threatening or life altering illness. And how we, as their clinicians and professional caregivers, respond to that suffering. So Larry, thank you so much for sharing your wisdom.

Well, thank you.

That was Dr. Larry Einhorn sharing his reflections on his 40 year career in oncology and his essay, "Love in the Time of Cancer." Join me next time for another conversation about the art of ontology.

I'm Lidia Shapiro. Editorial consultant for JCO's Art of Oncology, and the host of this podcast. With me today is Dr. David Korones, pediatric oncologist and palliative care specialist from the University of Rochester Medical Center and the author of "Talking to Children with Cancer, Sometimes Less is More," published in the October 1st issue of JCO. David, welcome to our program.

Thank you. It's good to be here.

I also want to thank you for your many contributions to Art of Oncology as a contributing writer and reviewer. You've really brought a very important perspective to our board and to our readers.

Well, thanks.

You're very welcome. In your most recent piece, David, you deal with what I think is one of the most difficult aspects of communication in oncology. And you've structured this essay almost in two parts. There's a story, the story of Kenzie. And then there's your reflection that is more scholarly where you really present a perspective on how to negotiate just how much information needs to be shared with an adolescent and her family who tell you that they really don't want to know. Can you start by sharing with our listeners a little bit about your story and how writing about it perhaps helped you process the very complex situation and feelings this situation triggered for you?

Well, sure. I think you're right. I don't think there's anything more daunting than having to communicate such horrible news to a child or to a teenager. And I also think that there was this inherent tension in this when a child tells you that they don't want to know. Because all our teaching is about being honest-- full disclosure. So we have this force of what the standard is. And then the other side of it is that child who doesn't want to know, who doesn't want to go by our standard. And it just creates a lot of tension in a situation that is already heartbreaking.

Yes, and you wrote it so beautifully. And I'd like to read for our listeners just a little bit of your essay. You wrote, "I know the evidence supports the practice of telling the truth. And I can recite the benefits of doing so. But let me tell you that when it comes to sitting down with a child, looking her in the eye, and telling her she's dying, it is impossibly hard. All that knowledge, accumulated wisdom, and experience flies out the window, and is quickly replaced by paralyzing heartbreak."

I was really stunned by that. It's just so beautifully stated. Tell us a little bit about that emotional aspect of the experience, and how you dealt with this paralyzing heartbreak.

And this is but one story. I feel like this happens almost every time where you read the books, you read the articles, it's clear what you're supposed to do, but then reality sets in. And when you're sitting in front of a child and family, it just doesn't get any easier. And on a personal level, it's just so utterly heartbreaking. And sometimes it is paralyzing. And I hope in writing about it-- actually that helped free me of some of my paralysis. But I hoped also in writing about it that I can let other people out there know that they're not alone.

Yes. In fact, I think that that's one of the very useful aspects of sharing our stories. And it helps others connect. It helps us connect with our community of oncologists. And also by writing, I think that in many ways you helped us imagine and explore the point of view of Kenzie and her parents, which is something that we often don't have time to do when we're pressured to make decisions in the moment when we're in the clinic or the hospital setting. So maybe it would be helpful to have you just tell us a little bit about Kenzie. Who was Kenzie? And tell us about her and her family.

Yeah, I think I wrote about her because, as I mentioned, she's not the only one that I had struggled with-- that we all struggle with. But there was just something about this girl. And I think we probably all experience this with some of our patients.

I wrote that she is beautifully normal. And she just could be any of our children. And so that takes it from the professional realm to the personal. Fingers flying on her cell phone dressed like any other American teenaged girl would be dressed. And that just added a layer of heartbreak to it.

She was remarkable also in that she was just comfortable in her own skin. She's a girl who could live very comfortably in the present, and wasn't weighed down by what the future held. She's a girl who could just savor the normalcy that her days at high school brought to her. She is a girl who was loved by friends and family.

Yes. And she's a girl who was so direct with you and your team. You talk about the fact that she was very quick to tell you what she wanted to know and what she didn't want to know. Now, you met her on a Valentine's Day in the ER. Tell us a little bit about that first meeting.

Yeah, well, I mean, I think I wrote about this too, kind of an extra element of heartbreak. I mean, it's on Valentine's Day of all days. And it was this beautiful soft snow falling. And here I am out buying a Valentine's card for my wife when this horrible event unfolds.

And I think what really struck me when I went to the emergency room, is seeing this-- again, this beautifully normal girl who just looked like any other American teenaged girl. And I was kind of weighed down by what I knew lay ahead for her, and the stark contrast between how normal her life had been up until that moment, and how all of that was going to shattered. And just the weight of that uneven distribution of knowledge, me knowing what lay ahead, and her and her family not just added to the heartbreak.

That's such an important aspect of the delivery of bad news just when we, as the oncologist, we know it. We're holding it. And we know things that the patient and her family don't know. And know just how this is going to affect them. And then finding a way perhaps of getting past that to connect in a helpful way.

You speak a lot about the fact that this relationship worked because it was a lot of trust. And I imagine that's what you felt at the beginning as well. That this was your one and only opportunity really to connect, and start building that trust that would guide you and the family. And keep you going as events unfolded, and as you knew predictably that things would get worse and worse.

Yeah. I think I also knew that I have to earn that trust, that that trust doesn't come from walking in the room with whatever credentials I might have-- that one has to develop, and earn it, and work for it And it all starts by listening. And part of that listening was honoring what she wanted to know and didn't want to know, and what her parents felt would work best for her.

Yes. You talk and you write about saying that it's OK for us to sometimes be unsure and to feel unsettled. I wonder if you could tell our listeners a little bit about how you and your team negotiated this over time. It seems that you sort of went back and forth, and tried over and over to assess just how much they needed and wanted to know. Tell us a little how that actually worked out.

Yeah, you would think-- I write that Kenzie clearly didn't want to know. And we think, well, what's the big deal? We explored that. She doesn't want to know what's going to happen to her. And case closed. But it just wasn't that simple.

For one thing, real time, when you're in the thick of it, it's always so weightier, and so much less clear than it is in hindsight. And for another, I think that it was so unusual for us to have this mature teenager where we knew what the path was. And yet, she didn't want to know what that path was herself. Or at least she didn't want it in her face.

And I think because it was so far from what we're used to, we wanted to make absolutely sure we weren't missing something. One thing I struggled with is am I just taking what she says at face value? Not exploring enough so that I can avoid having those awful conversations? I think I might have mentioned this. Am I just eager to jump at a pass on a hard conversation, or is this truly what she wanted? I think in the end, I think it takes a lot of back and forth with her, her parents, and with our team to make sure we were on the right path.

So in our final 30 seconds, can you tell a little bit or speak a little bit about how writing about this helped you perhaps to clarify you thoughts or process this very complex situation.

Absolutely. It helped tremendously. And I think just on a raw emotional level it provided a release. On another level, it just helped me think about this this more methodically, systematically, not to get rid of the emotion, but to have rational thought as part of the process. And it was just a nice way to honor a remarkable young girl.

Thank you. That was David Korones talking about his most recent essay, "Talking to Children With Cancer, Sometimes Less is More." Join me next time for a conversation about the art of oncology.

A doctor struggles to convey a prognosis to his cancer patient.

Read the related article "Talking to Children With Cancer: Sometimes Less Is More" by David N. Korones on JCO.org.

A tale of two mothers—one who has cancer, and one who is her oncologist.

Read the related article "Spring" by Melanie Seal on JCO.org.