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Choosing Mastectomy for a Chance to Be With My Kids

Photograph by Getty Images

In case you missed it, Angelina Jolie is married. If she’d been hurting for press before the ceremony, she’s getting her fair share — as well as mostly everyone else’s — now. But her name isn’t dominating headlines at the moment solely because it’s Mrs. Brad Pitt. No, recent news stories about her also had some variations of the title, “The Angelina Jolie effect: More women getting tested for breast cancer gene because of actress.”

I find it a little hard to believe that more women are getting tested for the breast cancer gene just because of Jolie. I was tested for the breast cancer gene in January after a biopsy of the calcifications in my right breast came back as positive. I also have some family history of breast cancer and am a Jew of Eastern-European descent, all of which makes me more likely than many to carry the BRCA1 gene mutation (although, as it turns out, I am not a carrier).

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Had none or only one or two of those three factors presented themselves, the test for the gene might have cost me more than $5,000 — and that’s with a good insurance plan. Fortunately (or unfortunately), since I was deemed a high risk, my out-of-pocket expense was zero. While I (kind of) like Angelina Jolie, my admiration for her bravery in speaking out so publicly about her preventative bilateral mastectomy is not nearly enough to spend $5,000 in her honor. I have a feeling I’m not alone. I have a hunch women are simply more educated these days about their risks than they are dazzled by Jolie’s star power.

At the same time the news broke about more women getting the BRAC1 test, it was also reported that more women are getting preventative bilateral mastectomies even though it supposedly doesn’t increase their chance of survival.

“Removing both breasts to treat cancer affecting only one side doesn't boost survival chances for most women, compared with surgery that removes just the tumor, a large study suggests. The results raise concerns about riskier, potentially unnecessary operations that increasing numbers of women are choosing.”

Come chat with my kids. And please look in their eyes while you judge my decision. I’ll wait.

As a woman who made a choice to have her non-cancerous breast removed, what stuck out to me in that lede was the phrase “for most women.” Along with the slightly older study that showed mammograms don’t save lives, I challenge the researchers, doctors and armchair surgeons among us to chat with my small daughters and ask them if they’d rather I had waited until my cancer potentially spread before doing something about it instead of getting a mammogram, and to see if it occurred in the other breast before getting it removed — in both cases the condition could have been much more advanced by the time it was detected.

No, really, come chat with my kids. And please look in their eyes while you judge my decision. I’ll wait.

It’s not news to me that the chance of my cancer returning is only a few percentage points lower than if my left breast remained intact. But the fact remains that it’s still marginally lower. Marginally, of course, means low, but that there was any chance of reducing my risk was enormous to me.

Was there a risk to the surgery, too? Yep. Was it low, but in the same way, also large? Yep.

Earlier this year, Marc Silver spoke on NPR about his wife choosing not to remove either breast after her cancer diagnosis, and after 13 years, she’s doing great, which is great. As he said, a bilateral mastectomy doesn’t entirely eliminate the fear of recurrence. Except for women like me who want to do everything they possibly can to reduce the risk, it’s still worth it.

Like Silver’s wife, it’s brave of some women to decide that statistics are on their side and a lumpectomy, radiation and wait-and-see attitude are good enough for them. There are also of plenty of other women, like me, who decide that the anxiety of waiting-and-seeing is more potentially painful than a preventative mastectomy.

While my recurrence risk is only 2 to 3 percent now as opposed to 5 to 6 percent had I chosen to leave my left breast alone, it’s that 4 percent difference that allows me to sleep a little better at night.

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My family doesn’t lump me into the “for most women” category. In fact, I’d hazard a guess to say most other women and their families also don’t feel as if they are “most women,” either. I am me. Whether I cut off my arm to fix a cuticle or a lopped off a breast to prevent even the most remote possibility of cancer returning, I do what I do to improve the quality of my life and ensure its quantity, too.

Surely there’s a study on this, but I don’t need one to tell me if what I’ve done is right, wrong, wholly ineffective or only a marginal improvement. Maximizing every effort to be here for my family is the only proof I require.

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