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The Time-Bomb Genes

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"To not do everything I possibly can to lessen my chances of breast cancer just feels irresponsible," she says.

The ultrasound didn't turn up anything, and Ker remains determined to get tested even though she's not at all certain how helpful the results will be.

"What's going to change?" she says. "It's not going to tell me I'm going to get cancer. It's only going to tell me about two genes. But how could I not get tested?"

This, of course, is the quandary. The science is good but not quite good enough. "We don't have all the answers," says Lauren Scheuer, a genetics counselor at Sloan-Kettering. "We can give people options, but that's just what they are, options."

Though Angela was more resolute about her choice than many of the women in the same precarious position, there was a searing irony in her decision to have a double mastectomy. For years she had been offended, outraged, and disappointed by many of the doctors she'd been to. Stunned by her harrowing family history, one doctor after another delivered a version of the if-you-were-my-wife-or-my-sister speech, which essentially consisted of imploring her, often during a first visit, to have a bilateral mastectomy.

It was one thing to hear this in the dark ages of breast-cancer treatment, that period before the activist movement took hold and forced the medical community to rethink some of its preferred treatment options. But it was inexcusable, Angela believes, to have this advice delivered after doctors were enlightened and even after the introduction of genetic testing.

"My argument is with the doctors who were unaware of the choices I could make," Angela says. "Those doctors who either didn't know enough about genetic testing or didn't give it enough credence. They were recommending -- without knowing enough about me or suggesting I get tested -- that I go in for a radical surgical procedure I may not have needed, as my cousin who tested negative didn't."

But it went deeper than that. There was the doctor who told her she didn't want to go into Manhattan for treatment; the one who said if she used him she'd be "patient of the week"; the one who refused to say specifically how many mastectomies he'd performed; and the one who told her, when discussing breast reconstruction, "you won't bounce but you'll never sag." He also told her the whole thing was really nothing to worry about because "you go in with breasts and you come out with breasts."

One doctor even told her to get cancer in one breast first and then he'd "take them both off." But the worst offense was probably committed by the doctor who assured her he could save her nipples. Most breast cancer starts in the ducts that come out from the back of the nipples, and the most critical part of doing a prophylactic mastectomy is getting every last bit of breast tissue.

"This whole process for me," Angela says, "has been one step at a time. Do you want to go into Manhattan? Do you want to go to Memorial Sloan-Kettering? People go and die at Memorial, don't they? Do you want to have the blood test? Do you want to do this? Do you want to do that? But I had to know, before making the final decision about my breasts, that I had found the best surgeon. I knew I needed someone who was trained to get every cell possible and understood how critical that was. Unlike the doctor who was going to leave my nipples. Unless I found a doctor I was comfortable with and confident in, I was not going to have the surgery."


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