The Arc of Therapy

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 treatm...