With or Without Boobs

Last week, comedian Wanda Sykes announced that she’d undergone a double mastectomy after being diagnosed with early stage breast cancer. To some, Sykes’s surgery seemed radical; after all, some doctors don’t even consider ductal carcinoma in situ cancer at all. But Sykes joins a growing cohort of women who, in the face of cancer, even very early stage cancer, opt to remove both breasts.

This is a troubling trend to many in the medical profession. For decades, breast conservation was king; doctors advocated removing only the cancerous breast tissue and recommended against disfiguring surgery. After all, studies have shown that, statistically, removing a healthy breast does not improve long-term survival.* So why are some women (6 percent of all breast cancer patients in 2006) rebuking medical advice and choosing to undergo an invasive, transformative procedure? As Sykes told Ellen DeGeneres, on whose talk show she broke the news, “It sounds scary up front, but what do you want? Do you want to wait and not be as fortunate when it comes back and it’s too late?”

It seems unfathomable to some that women would willingly give up their healthy breasts. But to some women who have been affected by breast cancer, it is just as unthinkable to keep them.

I can relate to Sykes. I, too, had a double mastectomy. But unlike Sykes, I didn’t have breast cancer. I didn’t even have Stage 0 cancer. Why would I, a healthy woman in my early thirties, choose to remove my breasts? Well, because, statistically speaking, they were going to try to kill me one day. So I decided to kill them first.

This blows some people’s minds. After all, by making this choice, I’ll never be able to breast-feed my future children (milk ducts: gone), never feel the sensation of my husband’s hands on my breasts (skin and nipple sensation: gone), never have saggy breasts (hey, there’s got to be some silver lining). But, by removing my breasts, I’ll also forgo the fate of so many female relatives who came (and went) before me. In just three generations, fourteen members of my family have developed some form of cancer, and eight women have developed breast or ovarian cancer.

It turns out that, aside from broad noses and last names with far too few vowels, my family shares a genetic mutation; those who inherit this mutation usually get cancer. And those who get cancer usually die from it.

A little science lesson: Ninety percent of breast cancers are random, but ten percent are caused by an inherited deleterious gene (commonly known as “the breast cancer gene,” or BRCA1 and BRCA2) that is passed from generation to generation. I’m a BRCA2 mutation carrier. Essentially, I have a typo in my genetic code. Though the error may be small, the problems it causes can be huge. Because of this little misspelling, my body can’t suppress tumor growth, especially the kind of tumors that make their home in soft, dense breast tissue. And because of this, I’m much more likely to develop breast cancer—about seven to eight times as likely as the average woman—and if I did, it would likely strike me young, be very aggressive, and probably recur.

With breasts like these, who needs enemies?

Women like me have a few choices, none of which are ideal. We can submit to intensive routine screenings, alternating mammograms, MRI, ultrasounds, and clinical breast exams every few months; we can take a chemoprevention drug that puts us into temporary menopause for five years and lowers our risk by about half (in other words, to about 4 in 10, but still three times or more the average risk); or we can chose to have preventative surgery—or, as I like to think of it, the mastectomy we’d probably have eventually anyway, but without the chemo and radiation and that whole having cancer thing, too.

Choosing to have a preventative double mastectomy was not an easy decision for me, nor is it for any woman who makes it.  After all, few body parts are more connected to female identity; if I cut off my thumb, I know I’d still be a woman, but if I cut off my boobs, what am I exactly?

It turns out there is a word for me: I am a previvor, and today is my day. A previvor is someone who has survived a predisposition to breast cancer, and National Previvor Day, celebrated on the last Wednesday of September, during National Hereditary Breast and Ovarian Cancer Awareness week, is designed to recognize those of us who fall into a gray area between breast cancer survivors and the rest of womankind. (National HBOC Awareness Week and Previvor Day is the good work of
Congresswoman Debbie Wasserman Schultz, a hero to all of us with naturally curly hair and a BRCA mutation, who sponsored House Resolution 1522 designating the week and day as such; it passed unanimously in the House in September 2010.)

It’s been almost two years since my surgery, and I’m happy to have the burden off my chest. I don’t feel any less of a woman because I’ve got silicone imposters where my natural ticking time bombs once hung. In fact, if anything, I’m more in touch with what it means to be a woman. I feel stronger for having confronted my genetic fate. I took stock of what mattered, and in the end, my rack didn’t make the cut. I can live without breasts. I couldn’t live with the possibility of what they could do to me.

So I understand why Wanda Sykes chose to be aggressive. I would have done—or should I say, I have done—the same thing.

* In cases of non-hereditary cancer

Steph H and her fake boobs live in Chicago with her husband and small army of felines. She blogged about her journey from genetic testing to mastectomy and life thereafter at goodbyetoboobs.com. For more information about hereditary breast and ovarian cancer please visit facingourrisk.org.

Photo credit Pondspider/Flickr

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