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Cancer Stories: The Art of Oncology - The Boy I Never Knew

04/11/19 • 28 min

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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...

04/11/19 • 28 min

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