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Unique to Women

One Woman's Story with BRCA1

Last spring I had a bilateral prophylactic (preventative) mastectomy. In September, I had my ovaries removed. I did both because I believed - and still believe - that the risk of cancer was real, and serious, and more than I could live with. To me, making those decisions to have surgery was as much an issue of choice - of what rights and abilities I have to control what happens to my body - as reproductive rights.

I am 44 years old. I am a strong feminist. I also have a mutation in BRCA 1 - one of the so-called "breast cancer genes."

When my mother was less than two years older than I am now, she was diagnosed with early-stage breast cancer. She had a mastectomy. They thought the cancer was small. They were convinced they had gotten it all, and that it had not spread. Within three years it metastasized to glands in her neck, and 18 months later to her brain. She lived less than five years after her initial diagnosis.

She probably had the BRCA 1 mutation.

Prophylactic mastectomy is a radical solution - but BRCA is a radical condition.  Before even making the decision to get tested, and certainly after, I did a lot of research. It is not only that BRCA raises the risk of breast cancer - based on the particular mutation I have, it put my risk of breast cancer in the range of 56% - 85%. (While preventative mastectomy may not reduce the risk to 0, it makes it pretty close.) But it is also that the cancers to which BRCA 1 woman are susceptible are more often estrogen-receptor negative (so tamoxifen, or other drugs that block estrogen  production, aren't a solution), they more often occur to women at younger ages, and they can be more aggressive and difficult to treat.  The ovarian cancer risk is somewhat lower - but it's still high, maybe 20 to 40% and ovarian cancer is much harder to detect and therefore often more advanced when it is found.

To have surgery was not a decision I made lightly, but was one that felt necessary. Because of my life experience - and my personality - I would not have been capable of waiting and watching and monitoring myself to see if, or more likely when, a lump appeared. It was hard enough for the nearly two decades since my mother died to deal with my (normally) lumpy breasts, anxiously searching to see if some new bump had emerged. It was hard enough to deal with the mammograms I had for years - I had the very dense breast tissue common in younger women, so those mammograms were difficult to read and I was often called in for follow up films and ultrasounds where they would find nothing certain, and then tell me to come back in six months and do it all over again to be sure.

I could not find a good enough reason to avoid surgery, when with that kind of risk factor I could very well have ended up not losing my breasts or my ovaries, but also enduring radiation and chemotherapy. Or worse.

I do not say that prophylactic mastectomy or oophorectomy (or even genetic testing) is the right decision for every woman. In many ways, it was probably easier for me: I am in my 40s; I have had (and nursed, and nursed, and nursed) my children; I have good health insurance which didn't blink at covering the tests, and surgeries, and follow up care;  I have the privilege of having a job where taking time off - and my lack of productivity as I dealt with my fear and worry and grief - was simply not an issue; and I have a husband who is absolutely and unequivocally supportive of this decision.

While I received tremendous love and support for my decision from my family, friends and co-workers, it was, ironically, two of my most staunchly feminist friends who seemed the least capable of accepting that I made this choice (or even that it is a valid choice). It was ironic because, as a feminist, I never defined my identity or my femininity by my breasts (which seems a very male, Playboy-magazine concept to me), and while they were part of my sexuality they were not its core component. And again, to me the point is that this is an issue of my choice to deal with my body as I believe is best with the risks that I believe exist.

But it is also important to recognize that while the surgery is my way of dealing with my immediate situation, there is much more breast cancer research that needs to be done, and done seriously - not just for the more vulnerable women who have BRCA, but for all women. And not just research on those "personal responsibility" issues that get pushed at us (have kids before 30, don't eat fat, eat soy, don't eat soy, don't drink alcohol, and so on) but on what I believe are likely to be the equally or even more critical environmental causes of cancer (pollution, the use and abuse of chemicals throughout our communities, hormones and antibiotics in our food, and so on).

So while I have been through a hard year, with a lot of fear and many tears, I also feel lucky, and relieved, and like I now have a life before me. And while I would never say what choice another woman with BRCA should make, I think it is crucial for women, and feminists, to be able to at least consider this option - and make their own choices, for their own bodies, for themselves.

Written by: Anonymous
Last revised: March 2005

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