The Arc of Therapy

Cancer Stories: The Art of Oncology

A doctor describes her 50+ history as a survivor of lymphoma treated with mantle radiation. Read the related article on JCO.org.

Transcript:

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 Arc of Therapy-- From Cure to Humbling Legacy, Gene Bishop, M.D. In June 1965, at the age of 18, I sat in a room with my parents and heard an oncologist tell me that I had Hodgkin lymphoma. If I shared that diagnosis with people, he said, they would look at me as if I were dying, because almost no one with this disease survived, but I would. With breathtaking confidence, the oncologist said a new treatment, radiation, would cure me. In October 2018, at the age of 71, I sat in an oncologist's office as he told me I had stage IV non-small-cell lung cancer, presumably as a result of that radiation in 1965. He offered palliative therapy. His goal-- more good days than bad. He called me "our humbling legacy." I reflect now on that arc, from optimistic cure through a mounting problem list of likely consequences of radiation, to the almost certainty that I will die of the treatment of a cancer I had in 1965. I received the best treatment there was in 1965, and I'm getting the best treatment there is in 2019, but I am no longer being promised a cure. Both my oncologist and I are living with the reminder that no treatment does only what we want it to do, and that one year's miracles may have serious consequences, even 50 years later. And although some of these may be known or theoretically possible, many are not even imagined until one, two, three, or many case reports begin to appear and random events turn into warnings and known consequences. For the patient seeking cure and life, an unknown but potentially dangerous future is hard to imagine. Some new miracle will come along. Physicians waiting for data, recruiting patients for the next clinical trial, or facing pressure from patients for positive results can also be focused more on immediate results. They may minimize the known or unknown future. How will physicians be both wise and humble? The first oncologist was right. I was cured of lymphoma. I graduated, went to medical school, and had a family and a full life. I shared the story with friends, patients, and colleagues when I thought it was appropriate or helpful. Look, I said to families facing radiation, I had radiation, and here I am, alive and well. A little hope never hurt anyone I never thought of myself as a cancer survivor on an ongoing journey. I thought of myself as a cure. And I certainly didn't think about the difference until many years later. If oncologists were no longer interested in me, then cancer was over. There was no concept or field of study of adult survivors of childhood cancer. Certainly no physician, neither the oncologists I saw initially nor the internists who later followed me when the oncologists lost interest, raised the issue. Why and when did I even begin to consider that I might be at some kind of risk? In 1979, 14 years after my treatment, the worst domestic nuclear power accident in US history occurred at the Three Mile Island nuclear plant in Pennsylvania. I was more than sympathetic to the nuclear disarmament movement. And although I understood that nuclear war and my radiation treatment were considerably different, I did begin to wonder if the treatment could have had unexpected consequences. I began to ask questions of physicians, with very few answers. Thus began almost 20 years of symptoms and consequences of being in the earliest cohort, not part of any study, before the age when anyone could request, if it occurred to them, weekly updates from the National Library of Medicine on consequences of earlier cancer treatment. In 1981, at age 34, I asked whether I should start mammograms early, and my internist asked the mammographers. "We don't know," I was told, "but it might be a good idea." In 1985, seeking answers to a persistent tachycardia cardiopulmonary testing and a Holter monitor showed a baseline heart rate in the 90s. I was told I was deconditioned and anxious. In 1986, a physician studying effects of radiation on the heart-- he had a seven-year follow-up at that point-- told me the only known effects was constrictive pericarditis, which I did not have. "Don't worry," I was told. Both were correct. I was anxious, but my ectopy and tachycardia were not symptoms of anxiety, they were the cause of the anxiety. I was anxious about the effects of radiation. I never tried to be my own doctor. But only I looked through the lens of a radiation treatment survivor. Not until 2006 did I find early consensus-based guidelines of which my physicians were unaware. In the late 1980s, I was denied life insurance because of the new right bundle branch block, but not until 2001, 36 years after my initial treatment, did a cardiologist name it radiation-induced heart disease. I imagined it as static rather than dynamic. Not only was my heart not static, but the entire field of radiation-induced heart disease was evolving. I didn't have a permanent scar, I had ongoing damage. And neither I nor my doctors had the evidence for where it was heading. I found a cardiologist who focus on cardiac consequences of cancer treatment. When I mentioned that hiking in the Canadian Rockies and trekking in Vietnam had ceased to be fun, the cardiologist found critical aortic stenosis. My already damaged conduction system did not survive an aortic valve replacement, and now I had both a pacemaker and a new aortic valve. In 2015, at age 68, I read a published report of abnormal exercise response in long-term survivors of Hodgkin lymphoma treated with thoracic irradiation. I recognized myself in graphic detail. No amount of training at the gym would get my heart rate below 90. That article appeared 50 years after radiation and 30 years after I first sought help, one of several sobering lessons in the length of time it can take to discover the effects of medical treatment. The truth is, in my own therapy arc, I was lucky. Every consequence until the lung cancer was treatable with the promise of a good outcome. I saw the article recommending breast magnetic resonance imaging for those who had received mantle radiation, appealed my insurance denial, and found my breast cancer early. However, two medical oncologists, two breast surgeons, and three radiation therapists all had vastly different treatment recommendations for my situation, reflecting the murky state of knowledge on treatment of Hodgkin survivors. A huge thyroid nodule was benign, but out came my thyroid with a different small focus of cancer. I faced each challenge, albeit with some depression and fear, with the knowledge that I would get better. Cure was still the operative word. In the arc of my disease, radiation had consequences, but they were not insurmountable. As I reached more than 50 years out, I think I breathed an inward sigh of relief. I expected to have progressive cardiac disease. I imagined I would develop congestive heart failure. I worried about lung cancer. It had been reported 40 years out. But there were few studies on 50 years out. I thought I was done with my cancers. When I developed a sudden and persistent cough, I began to worry. I could hear gurgles high in my mid-chest, but my doctors heard nothing. I doubted the pulmonologist's diagnosis of cough-variant asthma newly-present in a 70-year-old. My doctors began gently suggesting what they do when a patient has unexplained symptoms. "Perhaps you are anxious," they said. The classically-trained psychiatrist noted he hadn't seen a conversion symptom in a long time, but thought I might never have really thought through what it meant having cancer at age 18. Several unexplained symptoms and normal computed tomography scans later, I contemplated what a non-physician would do. What if I weren't thinking like a doctor, but more like my fellow survivors? Off I went to Facebook, an unimaginable resource in 1965. I typed "Hodgkin's survivors" in the search box, and up popped a closed group-- Hodgkin's Lymphoma Disease Survival and Late Effects, 1960s to Early 2000s. Here were 500 people from around the world who had received radiation, chemotherapy, or both. It was hardly a tidy cohort. Their treatments for Hodgkin's spanned the years from mantle radiation, to chemotherapy, splenectomy, improved imaging, and actual staging. As befits a social media site, they were seeking support, medical advice, and shared experiences. I was one of only two survivors on the site who were more than 50 years post-treatment. Initially, I felt lucky, at least until the lung cancer diagnosis. The number of valve replacements, arrhythmias, pacemakers, and stents was extensive. Many had severe neck contractures from radiation. Breast cancer seemed to be an everyday occurrence. The question of prophylactic mastectomies frequently was raised. Cough, lung disease, and esophageal reflux with aspiration all appeared. I briefly let myself be reassured that my pulmonologist was correct, and my cough had a reflux component, even if I never had a classic reflux symptom and a gastroenterologist was doubtful. If the medical world has been slow to recognize cancer survivorship, this non-random group has not. Many of them travel hundreds of miles to find survivorship clinics in various countries around the world. The more recently-treated ones had both the good fortune to benefit from the new field of cancer survivorship, but the bad fortune to be beset constantly by worries about what the future holds. As with much of the lay public, many believe that screening and early diagnosis are always beneficial, and are unaware that the evidence in our cohort is scant. I found myself alternately fascinated, riveted, terrified, and reassured, but refrained from diagnosing myself from Facebook. I also knew I had found my peeps, a cohort more aware of their risk factors than much of the medical world. One woman expressed relief when her new oncologist said, "this is all our fault." Others chimed in they had never heard a physician acknowledge that. My new oncologist had fancier words, "you are our humbling legacy." I am the living-- or perhaps I should say dying-- history of one of our more successful efforts to treat and cure cancer in the last 50 years. There are now numerous other efforts, especially to treat childhood malignancies. Awareness of long-term consequences, the concept of survivorship, and the concept of shared decision-making are but a few of the inflections in the arc of therapy. Many patients make difficult decisions choosing extremely toxic therapies that will extend life only months, with imminent consequences that are known. But many also make decisions on the basis of limited information, filled with hope. In early 2019, should an American woman wait while the Food and Drug Administration continues to investigate textured breast implants, or imagine she lives in France where sales have been halted because of reports of an association with a rare lymphoma? What will be the effects of the successful immunotherapy in 10, 20, or 50 years? Of course, physicians are focused on near-term cure, yet they must also acknowledge the uncertainty regarding possible late effects of the very treatment that is now saving their patients' lives. But if I am a humbling legacy, humility is needed. We need clinicians to provide guidance and information to patients as they find themselves in unknown and often frightening terrain, years or decades after completing their course of treatment. In my primary care practice, I often told patients I had left my crystal ball at home along with my magic wand. But I was usually referring to when they could return to work after a viral illness, not whether they would get a terminal illness 50 years later. I tried to imagine my 18-year-old self, and the doctor peering into his crystal ball. "You will have symptoms no one will believe. You will happily marry and successfully have one child." As long as he has a crystal ball, I might as well learn everything. "You will develop heart disease and require an artificial valve and a pacemaker. You will develop three other cancers, two of which will be treatable, but the third, at age 72, will be the cause of your death. Would you like the radiation and cure we can offer you now?" [MUSIC PLAYING] Cancer Stories, the Art of Oncology Podcast, presents the essay, The Arc of Therapy-- From Cure to Humbling Legacy, by Gene Bishop, published online in Journal of Clinical Oncology, June 10 issue, 2019. I'm Lidia Schapira, editorial consultant for The Journal of Clinical Oncology's Art of Oncology, and your host for Cancer Stories. My guest today is Dr. Gene Bishop, who is a retired general internist, and primary care physician and a clinical professor at the University of Pennsylvania. Dr. Bishop's essay, The Arc of Therapy-- From Cure to Humbling Legacy, addresses the personal and lived experience of a cancer survivor. Gene, welcome to our program. I'm so happy to be here. Thank you for having me. We're absolutely delighted. And your essay is so inspiring, and also so educational. I wonder if you can tell us a little bit about what you wish to convey to the audience of cancer clinicians about the experience of being a long-term cancer survivor. That's really an interesting question. Because one of the questions is how many long-term cancer survivors are still seeing oncologists. And to the oncology community, I want them to always have an open mind about possible effects of the medications they're using. I could see how it easily could become so exciting to find people in recovery, if not cured-- always a tricky word-- from new therapies that it's hard to think what it might be like 10, or 20, or 30 years down the line. And I think that just needs to be acknowledged. I think the more difficult question is how to have an open mind about therapies people might have received years ago, and to sort out possible unknown effects. This is such a challenge, and it is such an important point, I think, for all physicians-- not just cancer clinicians, but all specialists and all primary care physicians and generalists, because we may not know what to look for. And you have this unique experience of having being among the first in the cohort of very young patients who were cured by radiation. Tell us a little bit about what it was like for you as you were encountering symptoms which perhaps you thought were related to that therapy, but nobody really knew what to do with you. Yes, and I think that that's terribly important. One thing to remember is I was young. I was 18 when I was treated. And I probably didn't actually realize the import of what was going on. My 96-year-old mother is still alive. And needless to say, now still facing the fact that her 72-year-old daughter will die before her. But she really thought she was going to lose me at age 18. But I never skipped a beat. You know, I got radiation, didn't get sick, never missed a day of college, and thought everything was behind me. But once I became a physician-- which I don't think has anything to do with that, with my illness, it really had to do with the women's health movement of the 1970s-- once I became a physician, I noticed that I was having symptoms that didn't seem to me to be normal for a woman in her 30s and 40s. And I couldn't get anyone to consider that these could be an effect of radiation. They were right on board with, you're cured, that was a long time ago, and a seven-year follow-up somebody had. And they were way too willing, as many doctors are, to ascribe them to psychological symptoms. Now I didn't expect anybody to know that, 30 years later, particular effects of radiation would be reported, but I expected people to at least have an open mind, and say, you know, we can't find anything now. Maybe this has to do with your treatment. Let's make a follow-up plan. And I think that's terribly important. And nobody I saw was an oncologist. The oncologists were done with me. I was cured-- until I wasn't. And as I said, we don't have crystal balls. But one of the things that I learned from the Facebook group, which is quite an amazing place, is that people treated for Hodgkin's even much later than I am, and I presume other cancers, are still facing, from primary care docs and other doctors, "this happened a long time ago, it cannot possibly be affecting you now." And I think doctors need to remember there's a lot we still don't know about the human body and what we're doing to it. And default should be, "this happened a long time ago, I don't know anything about this, but let me look into it." And that's not always the default. You know, one of the things that struck me in your narrative is that here you are, 70-plus, a medical educator, and where you found your people was in an online community. You know, it was not exactly where I thought you would take a story. Well, I'm going to modestly say that I have a lot of faith in myself as a clinician. And I just knew I didn't feel right, and that nobody was coming up with an answer that made sense to me in terms of explanations of various symptoms. And I thought, well, what do people do? Oh, they go online. So I searched Facebook, which is not something I-- I do have a Facebook page, but it says, "I don't actually use this page. If you're really my friend, you know other ways to reach me." And I went on Facebook, and there is a closed group of Hodgkin's survivors. You have to apply to be in it. And it's moderated by a woman in the UK. And it was an unbelievable cohort. Of course, it wasn't, as I said in the article, tidy. Because it included people like me, who were treated only with radiation, before CAT scans, before staging. I've always been thankful that I missed the splenectomy stage. [BOTH CHUCKLING] I have my spleen. And for being such an untidy cohort, they had experienced many similar problems and were extremely well aware that they were lucky to be alive and that the treatments they had been given had serious long-term side effects. And although I had to refrain as a physician-- I basically didn't participate, I would say I was a lurker-- what I did do was post the previous article I have written, and I posted anything that I thought would be useful from the medical literature. I was not the only medical professional on the site. But when people say, gee, I'm having chest pain, what do you think I should do, let somebody else say, you should go see a doctor or you should go to the emergency room. But an incredible number of people who had seen doctors and gone to survivorship clinics but also been dismissed as, "this can't have an effect." And I realized-- I always thought I was pretty special, and I realized that it was a pretty large community, particularly in regard to Hodgkin's, of successful cures but with was sequelae. And what did you find in this community? Was it the connection with others or was it specific information? What kept you going back? Well, after a while, I got kind of tired of it. Not tired of it, that's not the right word. It was became disturbing, actually, because of the seriousness of the problems. What I found in the community were, one, people were supporting each other. And two, I found other people who had unexplained cough, who-- at one point, a physician was trying to convince me that my cough was all due to reflux even though I'd never had a reflux symptom. And I found many people who had shared some of the symptoms that I had had, which didn't make me think, oh, good, now I have this, but it made me realize that I was very far from alone, and that even I, who thought I had spent quite a lot of time learning about long-term effects of radiation, had not understood how many people were living with serious neck contractures, reflux so severe that they had to be hospitalized, chronic cough. It seems that because I had escaped them, I hadn't realized. And I'm not sure anywhere I had seen the collection of symptoms that you can see in this cohort. So I didn't feel necessarily supported by the community. I wasn't looking for emotional support. But I was looking-- in the National Library of Medicine I hadn't found a good explanation for my symptoms. And so I thought, well, let's see what social media has to offer. Maybe somebody will have something that I can go back to my doctors with. I was astounded, around the world, by the community of survivors. It's so interesting. Because through social media, we can actually find out so much about how patients and survivors experience their disease and their trajectory after we say goodbye, thinking that, as you put so nicely in your essay, that we're done. I have a question for you based on one of the things you just said. And mentioned survivorship clinics. How do you think they are now helping patients who have similar stories to yours who are long-term survivors have they developed in the way that you anticipated? Do you think they're helpful? Well, that's a good question. And I can easily get out of it by saying I know nothing about it. Because in my own case, there were no survivorship clinics. And I was the only person who kept trying to think, gee, is this a problem that I'm going to have, or how do I think about this. And so for instance, the University of Pennsylvania where I'm now being treated, has a survivorship clinic. But I've never been there, because I already, as a primary care doctor, have two oncologists-- I mean, I already have such a team that the survivorship clinic has nothing to offer me. So the most I know about the survivorship clinics is really from the Facebook group, where people find them quite helpful. Because a knowledgeable person is can actually look up and see who they are, what year they were treated, what treatments they received, and what they now know that they're at risk for. So I think there's probably a good use to survivorship clinics. I think, as a former primary care doc, there's just no way I could know that about every treated cancer patient that I see and what the treatments they might have received. So I think that survivorship clinics are probably quite useful, but I have no personal experience with them at all. I think if I were still in practice and I saw somebody who said to me, I was treated for childhood leukemia, or sarcoma, or whatever, I would refer them, at least for an evaluation, and then see them back and see what they thought. But I have no personal experience. I think survivorship has gotten pretty trendy. And one of the interesting questions is, how do you even define a survivor? So as we bring this interview to a close, I have one question for you. You end the story by saying that even if you knew then what would happen as a result of treatment, you would do it again. At least that's what I understood. Can you tell us a little bit about the emotional journey of being a cancer survivor. Sure. I mean, of course I would do it again. I was 18, and I'm 72. I've had a life. But I think, for me, there was a turning point between thinking of myself as a cure-- over and done with-- and being a survivor. And I wrote about that a little in a Journal of General Internal Medicine article that's referenced in my article, called "Seeking the Proper Tense." I spent, I'd say, the first 20-something years just feeling like it was in the past, that whatever was going to happen, I could deal with, that I had really escaped. And getting breast cancer-- which, by the way, was very lateral, and there was no agreement among my physicians whether I got breast cancer because I was a 60-year-old American woman or because I had had radiation-- getting breast cancer really hit me in a different way. And I said, oh, I could actually have a lot of problems, and I could have a lot of different problems than people who randomly get some other cancers. And I felt like I really had to make plans for the latter part of my life to think about what the consequences of this treatment might be. Could I continue to live in a three-story house? It was clear to me that I had ongoing heart disease. And I made a transformation in my head between being a cure to being a survivor. I joined a writing group at Penn for cancer survivors. And before that, I never thought of myself as a survivor because I hadn't lost my hair or vomited, which I think is what a lot of people think of if you have cancer-- If you really have cancer then you have to undergo therapy that makes you ill. And none of that was part of my past. But I realized that I was a survivor, and that something had changed in my body, and I would have to deal with it. And it's been very difficult. I'm very sad right now, you know? And it was hard to write the article. I imagine. I imagine. Well, those of us who read the article and continue to learn from it appreciate that you did write it. We thank you for it. And we wish you also good health. And thank you so much for sharing your reflections. You're welcome. I hope they are helpful to physicians. I really appreciated my oncologist-- his calling me "our humbling legacy" really sparked the article in a way. I'm far from cure at this point. Thank you. Thank you for sharing your story. That was Dr. Gene Bishop sharing her reflections on being a cancer survivor and living with lung cancer. This is Lidia Schapira, your host for Cancer Stories. Join me next time for another conversation about the Art of Oncology.