In late September 2001—it was already a bad month—my sister Mary, who had just turned 33, learned she had breast cancer. Her doctor suggested the rest of us get tested for the BRCA2 gene, which increases the risk of breast cancer. One in every 800 women carry that gene, and my doctor told me that if I had it, I’d have about an 85 percent chance of developing cancer, given my family history.
My sister Lita and I also came back positive. My oldest sister, Susan, was negative, although she has since developed the disease, as was our mom, who now has ovarian cancer. I had already 80 percent decided that if my test came back positive I’d have the preventive procedure—the double mastectomy.
A couple of months later, Lita was diagnosed with [Ductal Carcinoma in Situ], a noninvasive form of breast cancer. The day after Mary’s surgery, I had my yearly checkup, and the doctor casually told me, “You know you have a cyst, right?”
Well, that takes on a whole different meaning. It turned out to be nothing, but I thought, “I don’t want to go through this worrying every six months or a year because it’s just too much.” Neither did I want to do chemo if I did get cancer—I’d seen Mary go through it. She’s superbrave but there were days when she wouldn’t even talk as she thought she’d throw up.
The doctors agreed with what I was doing. I just didn’t need anybody to tell me I was doing the wrong thing, because they’re not in my shoes—but they never did. They all told me: “You’re making the right decision—your odds [of getting breast cancer] are really high.”
I thought I might have a bit of depression right after the surgery, but I didn’t. I thought, “It’s done.” I don’t regret my decision at all. To me it was just a matter of when I’d get the cancer, not if.
I’ve grown accustomed to my reconstructed breasts. Except for the dating part. That’s a whole different ballgame now. You think, “Do I tell them right away?” If he’s a total boob man, I don’t need that. But if you wait till later, what if they freak out because they’re different and they have a scar and there’s no nipple?
I feel horrible for anybody doing this on her own. My sisters and I are very close, we see each other several times a week, and we do family dinners Sundays at my mom’s house. We are lucky because we have such a strong support network.
People ask me, “Are you going to pass it on to your daughter [Kailyn, 20 months]?” What am I supposed to do? Are none of us ever supposed to have kids because we have this gene? That’s hitting us doubly hard. But I do worry about passing it on. Hopefully, by then, technology will be better and she can either be watched like a hawk very early on—or maybe they’ll have some treatment for it. You just hope for the best.
Only about 6 to 7 percent of O.C.’s breast cancer cases occur in younger women, but it’s still the leading cause of cancer death among women ages 20 to 39.
—The Orange County Affiliate of Susan G. Komen for the Cure and UC Irvine’s Department of Epidemiology
Photograph by Jason Wallis
This article originally appeared in the January 2010 issue.