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Cancer Stories: The Art of Oncology
American Society of Clinical Oncology (ASCO)
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One oncologist provides his take on responding to "compassionate use" requests
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.
[DR. LIDIA SCHAPIRA] Welcome to JCO's Cancer Stories-- The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content, and offering enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org.
[GREG GUTHRIE] "Compassion and Compassionate Use," by David J. Einstein. The email came down to this. This patient is running out of options, and he and his family are starting to think outside the box. Two months prior, the sender was my co-fellow. Now, after a blissful vacation month entirely unplugged from oncology, he and I were junior attending physicians, launched into the dual frontlines of inpatient and outpatient oncology.
He was staffing the consult service, I the inpatient oncology service, both of us simultaneously trying to keep our backburner outpatient clinics and research projects from boiling over. He was letting me know about my newest admission, a patient with advanced choriocarcinoma, which was ostensibly within my area of expertise of genitourinary cancers.
During years of residency training, we had learned to eyeball patients and differentiate sick from not sick-- or really, those who might be imminently dying from those who were OK for now. As oncology fellows, we recognized a new group-- the patients who seemed to be imminently dying on paper, but in person looked amazingly normal. The patient referred to in the email was such a patient-- an energetic engineer in his 50's, with a more than slight Boston accent, despite his years in California and Texas, and plenty of Red Sox gear to match.
On paper, he was in dire shape, with treatment-resistant advanced cancer and increasing toxicities of treatment. The patient and this family had taken on his disease with a battle mentality that works for some and makes others cringe. After multiple rounds of chemotherapy, resections, and radiation treatments failed to cure his disease, he moved on to the high-dose chemotherapy with autologous stem cell rescue that is the standard of care in this setting. If some chemotherapy is good, more is better.
However, he eventually exhausted his supply of stem cells, still without having achieved remission. Time to think outside the box, turning to his identical twin brother as a source of new stem cells. The patient proceeded to a last-ditch effort at high-dose chemotherapy, this time with syngeneic transplantation. It worked, for approximately three months.
Despite the most intensive efforts, his disease kept bouncing back. At this point, it was clear that chemotherapy would only transiently suppress his cancer, but not cure it. Meanwhile, his treatments left him with hearing loss severe enough to require hearing aids, poor kidney function, foot numbness, and bone marrow that, even on imaging, looked exhausted, plus prolonged cytopenias to prove it. What could be done?
This patient and his family had crossed the country in search of an outside the box treatment that might offer him the benefit that stand treatments had not. We are used to patients looking online for new diets and complementary medicines. We understand that this is a way to seek an active part in their care, when they otherwise feel like passive recipients.
The patient and his family had gone further, identifying a clinical trial available at our hospital that they desperately wanted to join. But the trial was in a different tumor type. And moreover, he would not be a candidate for any of the trial, given his accumulated treatment-related toxicities.
Undaunted, his sister found an online poster from our peer institution across the street, describing a novel compound used to treat a patient with his disease, with the resulting and seemingly miraculous remission. Again, we are accustomed to the patient who brings in the latest online research to an appointment. Sometimes it is not scientifically valid. Sometimes it is valid, but not applicable to the situation. And occasionally, it is both valid and applicable, and actually does result in a treatment change.
As I scrutinized the information the patient's sister provided, it actually seemed both possibly valid and applicable. I could find no obvious toxicity that precluded use of this drug. And yet, it was e...
The Arc of Therapy
Cancer Stories: The Art of Oncology
07/18/19 • 31 min
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...
The Bomb
Cancer Stories: The Art of Oncology
06/10/19 • 21 min
The Boy I Never Knew
Cancer Stories: The Art of Oncology
04/11/19 • 28 min
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 thi...