Lizzie Stark is the author of “Pandora’s DNA: Tracing the Breast Cancer Genes Through History, Science, and One Family Tree.”
Until I had doctors remove my breasts and rebuild them again, I was a feminist who never saw herself as particularly feminine. Since then, I’ve questioned my feminist cred and tossed out my jeans in favor of dresses.
When I signed up for surgery, it didn’t seem like I had a whole lot of choice. A blood test at age 27 revealed a harmful mutation in my BRCA1 gene — a mutation that gives women on average a 55 to 65 percent chance of developing breast cancer and a 39 percent chance of developing ovarian cancer. It had already given my mother, my grandmother and my grandmothers’ two sisters breast cancer in their early 30s. My mother and grandmother survived after painful and exhausting ordeals of chemo, surgery and radiation. But the mutation killed my great-aunts: one dead from breast cancer at age 31, the other from ovarian cancer at age 56.
I decided I couldn’t enter my 30s with a looming death threat. I couldn’t stand the limbo of both breast and ovarian cancer surveillance, which sent me to at least a half-dozen screening appointments each year and made me a professional patient. As a newlywed, I also didn’t fancy the hot flashes and reduced sex drive that would come with taking estrogen blockers to temporarily lower my cancer risk. And so I elected to have my breasts removed (and will probably do the same with my ovaries after trying to have children).
In a way, it felt empowering. I educated myself about the options and benefited from modern science on my own terms. With my double mastectomy in 2010, I reduced my breast cancer risk to single digits.
But I couldn’t avoid a creeping feeling of guilt, which intensified as I began researching a book on breast cancer genes. I learned that I had volunteered for a surgery honed in the 1890s, a period when medicine was pretty blasé about cutting out women’s body parts and internal organs. Ovaries and uteruses were removed for conditions as diverse as irregular periods, epilepsy, nymphomania and precancerous lesions on the cervix. A few decades later, women with lumpy breasts were subjected to preventative mastectomies on the mistaken assumption that lumpy breasts raise cancer risk.
The doctors who performed these surgeries didn’t seem to worry too much about the destruction they left behind. For generations, the standard of care for breast cancer patients involved the removal of pectoral muscles and lymph nodes, as well as breast tissue and skin, in a single block. This faulty one-size-fits-all approach left my grandmother and one of her sisters stoop-shouldered, reduced the mobility of their arms and caused lymph fluid to accumulate painfully there. My grandmother was not merely flat-chested afterward — her chest was concave. She could not have reconstruction even after it became available.
It wasn’t until the 1970s that the activism of women such as journalist and breast cancer patient Rose Kushner began a movement toward less disfiguring approaches. These activists objected to the practice of doing biopsies and mastectomies in a single surgery — without waiting for patients to wake up from anesthesia so they could hear their biopsy results and weigh their options. And they questioned the assumptions of doctors and researchers.
They were right: By the early 1980s, lumpectomy plus radiation had been shown to work just as well as radical mastectomy in treating cancer.
Yet here I am, three decades later, having amputated my breasts based on risk (albeit astronomical risk) alone. Yes, I was in control of this decision. And no, less-disfiguring treatments aren’t on the horizon. The BRCA1 mutation exists in every cell of my body, so while surveillance may improve and surgical recommendations may be refined, it’s hard to imagine a drug or procedure that could noninvasively fix this. Scientists have been working on a breast cancer vaccine, but it’s still highly experimental. It wouldn’t have been smart for me to wait — or to raise my hopes for a miracle cure, only to have the rigors of science dash them.
Still, my choice of such a drastic procedure contains a whisper of betrayal of the activists who fought for less-extreme solutions to the cancer question. The feminist in me wonders whether I simply behaved like a good lady patient who just did what her doctors told her to do.
I also feel ambivalent about my new breasts. One hard-core feminist position is that women shouldn’t have reconstructive surgery. “Prosthesis offers the empty comfort of ‘Nobody will know the difference,’ ” Audre Lorde wrote in “The Cancer Journals.” “But it is that very difference which I wish to affirm, because I have lived it, and survived it, and wish to share that strength with other women. If we are to translate the silence surrounding breast cancer into language and action against this scourge, then the first step is that women with mastectomies must become visible to each other.”
I’m not fully on board with Lorde. I wanted to wake up from my mastectomy with reconstruction complete, to insulate myself from feeling the loss. But it was a loss. And so I’ve flashed my new rack for close friends — wanting them to both acknowledge the horrible thing that happened to me and reassure me that I look normal.
A confession: I upsized a bit. At first, I simply wanted breasts the same size and shape as my natural ones. But perhaps because I was giving up something I valued, I found myself wanting quantity, in the same way a dieter might eat three low-fat cookies instead of one made with real butter. Also, reading threads on Internet forums, I found that other women in my position often regretted not going a little bit bigger. I didn’t want that kind of regret.
But waking up to a new, plastic bustline had unexpected consequences. When I signed the consent forms before surgery, it was easy to read past phrases like “permanent loss of skin sensation,” which seemed a small loss compared to the certainty I’d gain. Only now do I understand what that really means. I can’t trust the nerves in my chest to tell me if my shower is too hot or if I’ve bumped into someone on my way to the bar. There’s a permanent numbness, reminiscent of a dentist’s shot of Novocaine.
My fake breasts have also altered my sense of myself. I was never a girly-girl — I always viewed myself as a person first and a woman second, and gender as too confining. When my breasts came off, though, I began plucking my eyebrows, caking on makeup and listening to Katy Perry. Only after losing body parts so loudly associated with femininity did I begin to see femininity as a core part of my identity.
Furthermore, the false perfection of my new chest — full, eternally youthful, never to sag — has at times made me feel unhappy about the rest of me, opening me to body shame I’d never had before. Why stop with breasts? Why not deal with the spare tire, the incipient angel wings and the small smile lines appearing around my mouth?
The feminist in me is uncomfortable with the idea that I’ve already altered my body to fit a certain standard of beauty. I don’t like that the only function of my chest is now to please the eye of the beholder, although to be fair, sometimes that beholder is just me.
At the same time, it’s probably good that reconstruction has made me more aware of my vanity and insecurity, robbed me of my moral superiority, and forced me to think about, and accept, who I really am.
If I were somehow offered a do-over, I know I’d make the same choices. I’m grateful to be able to worry about whether I’m living up to my feminist ideals — and not to have to worry so much about dying of breast cancer.