I carry a genetic mutation increasing my risk of developing breast and ovarian cancer. My children have a 50 percent chance of inheriting the mutation. My 22-year-old son recently noticed a breast lump and asked me to join him when he met with a surgical oncologist to be evaluated.
The surgeon performed a skillful physical exam but provided neither effective risk assessment nor empathetic counsel. Afterward, I sent an email to friends briefly explaining what had gone wrong during the appointment. “We want to know how you managed not to hit him,” they asked. I did it by practicing restraint: slowly counting backwards from 10 and taking very deep breaths.
Here’s my countdown:
10. I did not correct the icy-blue-eyed surgeon with steel-grey hair and steady hands — 50? 60? — when he dissuaded my son from pursuing genetic testing. The surgeon had shaken my son’s hand, looked him in the eye, and palpated my son’s slender, muscular chest, identifying the small lump under my son’s left nipple. A positive finding of a mutation, the surgeon said, adjusting the top of his surgical scrubs, could expose my son to discrimination in the workplace and in obtaining health insurance. That is, I did not say, “The scenario you describe is illegal in this country. As of March 23, 2010, with the passage of the Patient Protection and Affordable Care Act (aka “Obamacare”), if anyone were to attempt to discriminate against this young man in the workplace or in the process of applying for health insurance because of a positive finding for a genetic mutation (a pre-existing condition), this person would be subject to a massive lawsuit.
9. When this surgeon used the word “anxiety” for the eighth time to a) describe my son and myself and b) provide his vision of a course of action, I did not refer this man to Leslie Jamison’s collection of essays, “The Empathy Exams.” “Empathy,” writes Jamison, “isn’t just remembering to say that must really be hard — it’s figuring out how to bring difficulty into the light so it can be seen at all. Empathy isn’t just listening, it’s asking the questions whose answers need to be listened to. Empathy requires inquiry as much as imagination. Empathy requires knowing you know nothing. Empathy means acknowledging a horizon of context that extends perpetually beyond what you can see…”
8. I did not bring up this statistic: Though men make up only 1 percent of breast cancer diagnoses annually in the U.S., they may be up to 25 percent likelier than women to die from the disease, probably because of lack of awareness and late detection. Nor did I mention that generally male breast cancer presents with a detectable lump and is almost always linked to radiation exposure, unusually high levels of estrogen or a genetic mutation. Surely the surgeon knew these statistics? But my son did not. And I did not want to scare him.
7. I said nothing to this surgeon’s response to my son’s question, “But wouldn’t it be relevant to know if I carry the mutation?” His answer: No, you know you have a family history of breast cancer.
6. I said nothing when this surgeon dodged my son’s question: “If my grandfather didn’t have the mutation,” my son wanted to know, “wouldn’t he not have breast cancer? And wouldn’t it be important for me to know if I carry the mutation, too, to asses my risk?” The surgeon’s reply: The only way you’ll know if you have cancer is to have the lump removed. The surgeon’s answer, while true, sidestepped the elephant in the room: whether my son carries a mutation elevating his risk of breast cancer.
5. When this surgeon ridiculed an actress whose name he could not remember for publicly disclosing her status as a mutation carrier and for undergoing prophylactic mastectomies, I offered him the actress’s name.
4. This medical doctor derided women with family histories of breast cancer for seeking screening for genetic mutations linked to cancer and for pursuing prophylactic mastectomies when findings come back positive, calling the surgeries “possibly unnecessary” and not proven to save lives. (Of course, this is exactly what I had done, but this surgeon wanted to make sure I didn’t think he was criticizing me, in particular.) Still, I interjected only that I had made my decision a decade and a half before I’d known who Angelina Jolie was and that I’d had 5-year-old triplets to raise at the time. That is to say, I did not hit him.
3. I did not mention that researcher Mary-Claire King, who first identified the BRCA 1 mutation, last year called for universal BRCA screening in young female populations with or without family histories of breast cancer as the most effective, even essential, method of cancer prevention. King described the BRCA 1 and 2 mutations as “unambiguously damaging” and reported that random genetic testing of patients diagnosed with breast and ovarian cancer turns up a 50 percent positive rate, regardless of family history. Nor did I point out that King has received international recognition for her work, including The Lasker Special Achievement Award in Medical Science, which “honors scientists whose contributions to research are of unique magnitude and have immeasurable influence on the course of science, health, or medicine,” while this surgeon — an M.D./Ph.D., a full professor of surgery and with almost 300 scientific publications — has not.
2. When this surgeon asked whether my son and I would like his administrative assistant to contact us to schedule a follow-up appointment, I said, without the slightest hint of rage, “No, no, I think we can take it from here.”
1. I chose not to write a letter to this man’s department chair explaining that, though he may be a brilliant researcher and excellent surgeon, he offered my son an opinion that was factually and legally irresponsible and could be repeating these mistakes in countless exam rooms every day, every week and every month, putting patients’ health at risk.
In the end, my son subsequently chose to pursue genetic testing in a different medical setting. He is still awaiting his results.
Cathy Corman is a freelance writer, audio producer and lecturer in American studies and the Honors College at UMass Boston.