I ran across Peggy Orenstein’s NYT article Our Feel Good War on Breast Cancer from April and found myself nodding along to it. She touches on a lot of important points: the way survival rates can be misleading, that self-exams don’t save lives, that mammography has its own risks and can lead to over-diagnosis, the problem with generalized “awareness” of breast cancer without research dollars or action to back it up, etc. Even though I knew many of these things already, pinkwashing ideology can be hard to shake off: it’s everywhere and it’s relentless. I find it refreshing to read an essay that so succinctly and elegantly breaks down the myths of breast cancer and pinkwashing. Go read it if you haven’t already.
Orenstein’s NYT article talks about how early diagnosis doesn’t necessarily save lives, but it certainly extends a woman’s knowledge that she has cancer or, in many cases, pre-cancerous conditions like DCIS. It also forces a woman to take action, which leads to overtreatment, unnecessary surgeries, and emotional turmoil. If left untreated, many of these women would never develop breast cancer. Some would, however, and at this point it’s impossible to separate those women whose DCIS will become cancer from those women whose DCIS will remain simply DCIS. As a result, many women are overtreated to save those few.
BRCA+ women face this uncertainty in an extreme way. Our unprecedented knowledge of our hereditary risk leads to overtreatment, unnecessary surgeries, and incredible emotional turmoil for women who otherwise would never develop breast cancer. Like women diagnosed with DCIS, women diagnosed with “Hereditary Breast and Ovarian Cancer Syndrome”–the blanket condition for BRCA+ women–are told that many of them will develop breast cancer and some of the will not. And similar to women with DCIS, there’s no way to tell at the moment which BRCA+ women will be the unlucky ones who actually develop cancer. It’s a sad, but unavoidable fact that genetic testing casts women who might otherwise live healthy, cancer-free lives into these uncertain waters.
Orenstein points out that women with breast cancer routinely overestimate their chances of having a recurrence and then this misinformation becomes the basis for the choice to have mastectomy of both the cancerous breast and the other healthy breast. Orenstein, who is not BRCA+, considered mastectomy of her non-cancerous breast. Her doctor told her that this would be a psychological, not a medical, choice since her chances of a second recurrence was low. Orenstein chose to keep her healthy breast. I don’t want to question this choice in any way, but I do want to question her doctor’s Cartesian opposition of the merely “psychological” with the objectively “medical.”
Here’s why: my biggest fear as a BRCA+ woman is not that I will develop cancer if I choose to keep my currently healthy breasts. My biggest fear is that I will spend my life doing intense surveillance and I will die in my sleep at 102, utterly cancer free, but having lived a life nonetheless defined by the threat of breast cancer.
At the moment, I undergo surveillance two-three times a year. Last time, the 3 appointments that I originally scheduled for a mammogram, manual exam, and ultrasound ballooned into 9 appointments when my scans came back with suspicious blips on them–and my scans always come back with suspicious blips on them. Soon I was booked for an MRI, another mammogram, two more ultrasounds, a biopsy, and full bloodwork. Surveillance took over my life for a two month period. It’s expensive (all those copays!), it’s disruptive to my work and personal life, and most of all it’s emotionally exhausting. It happens every 4 to 6 months.
With my genetic makeup and family history the odds that I will die cancer free are pretty small, but still possible. As I peer into my future, I see 40+ years of tests and scans, poking and prodding, endless waiting rooms and doctors in white coats, waiting for test results, tears and sleepless nights. Assuming a minimum of 5 appointments for surveillance, twice a year (a conservative estimate, but still), I’m looking at 400 appointments for surveillance alone before the age of 70. Need I repeat that surveillance does nothing to prevent cancer?
The most horrific thing that I can think of is not that all this testing will find cancer, but that it will never find anything and I will have wasted my life being afraid and hyper-vigilant. And so I have chosen prophylactic mastectomy not simply with the hope that it will dramatically lower my risk of breast cancer, but also with the hope that it will bring me a modicum of psychological wellbeing. There’s nothing “merely” psychological about this choice. Mind and body are connected. The psychological trauma of being BRCA+ cannot be underestimated and it has a direct impact on a woman’s quality of life and physical well being.
Not so long ago feminist health activists were fighting for women with breast cancer diagnoses to keep their breasts. The push for less invasive treatments, for lumpectomy and chemotherapy and radiation, was and is important. The emphasis on every woman’s right to bodily integrity, to not have her breasts viewed as expendable by a cavalier patriarchal medical industry, has changed cancer treatment in the United States for the better. But the lessons learned by the feminist health movements of the 1970s and 1980s about survivors in general cannot easily be mapped onto BRCA+ bodies. The ethical choices we face are knotty and feminism has not yet tackled them.
I don’t want to argue that prophylactic surgery is an unmitigated good: as every BRCA+ woman who has considered surgery knows (and what BRCA+ woman hasn’t at least considered it?), it’s most definitely mitigated. I don’t want to idealize surgery or depict women who choose surgery as brave or depict women who choose surveillance as weak. As I’ve said before, the truth is BRCA+ women don’t have good options and until we have better options it is often difficult to even know what constitutes a good choice. In the meantime, these choices are incredibly personal and prophylactic mastectomy is only “good” if it brings BRCA+ women emotional peace and physical well being.