One in Four

A woman at high risk for breast cancer considers her options: vigilance, preventive mastectomy, or denial?

Just by coincidence, I usually see my breast surgeon in October, National Breast Cancer Awareness month, but I saw her early this year because she's on maternity leave again. After my visit, I ran into a friend. When I told her where I was, she suddenly looked alarmed. "I didn't know you had breast ... problems," she said, concerned.

"I don't!" I jumped to reassure her. Then I was suddenly tongue-tied: So why do I have a breast surgeon? I see her two or three times a year, and I think of her as part of my crew, like my therapist, my hair stylist, the woman who does my nails. But she's not exactly a yuppie indulgence.

Five years ago, a genetic counselor told me I was at "elevated risk" for breast cancer. My mother died of it at 45; her mother had been struck by the disease in her 40s but survived. Since both women developed breast cancer at a relatively young age, they likely had a genetic problem that allowed a later "trigger" -- such as diet, hormones, chemicals -- to bring on the disease earlier than in a woman without a genetic predisposition.

My own lifetime risk of breast cancer, based on epidemiological studies, was estimated at one in four, compared to the "average" woman's lifetime risk of one in eight. I was left with a choice: preventive mastectomy, extreme vigilance, or denial.

I briefly opted for denial. The confusion over what to do was paralyzing. Preventive mastectomy seemed barbaric. I like my breasts and I didn't want to lose them to a disease I may never get. Besides, surgery can't remove everything, and sometimes cancer shows up in the tiny bit of breast tissue that's left behind. That seemed just my luck -- I'd lose my breasts but wind up with cancer of the tissue around my collarbone.

The "extreme vigilance" option wasn't terribly reassuring, either. The news of my elevated risk coincided with a sudden surge in breast cancer activism, as advocates began to protest the lack of progress on prevention, detection, and treatment of the disease. Suddenly, activists like Dr. Susan Love were questioning the utility of mammograms for women under 50, whose dense breast tissue makes it harder to spot a small tumor. Experts began to debate whether annual mammograms saved lives or created a false sense of security in younger women, causing them to neglect to examine their own breasts.

Not that breast self-exam was a much better option, the advocates noted: By the time a breast tumor is large enough to feel with your fingers, it has often already spread. And with treatment options still limited to "slash, burn, and poison" -- surgery, radiation, and chemotherapy -- death rates were remaining high, despite earlier detection. I admired the new activism, which was intended to goad the medical establishment into action. But it also, for a time, intimidated women like me into not acting.

That's when I met my breast surgeon. On our first visit, she quizzed me about my family history of breast cancer -- and about my daughter, my writing, and mixing motherhood with a career. Roughly my age, she wanted to start a family, but worried about how it would mix with her practice. Our conversation tacked back and forth between cancer research, motherhood, and men, and I walked away with a plan of action: She'd examine me manually every four to six months, and I'd get a mammogram once a year.

Mammograms work for me: My breasts happen to be less dense than those of most women my age, or as my radiology technician put it, "You have the breasts of a 55-year-old woman." I wouldn't have imagined thrilling to those words 10 years ago, but in this context they were the nicest thing anyone could say about my breasts.

That was almost five years ago. In those years, my surgeon has had two babies. I've gotten divorced and changed jobs as well as boyfriends. We have a relationship. When we visit, she asks me for advice about childbirth, child care, and preschool. I ask her if I should think again about preventive mastectomy (she says no), or worry about a tiny pimple on my chest (she pronounced it "a big nothing"), or continue dating someone who travels more than I do (she left that one up to me).

Her office calls when it's time for my appointment. They call again if I don't call back. I feel too guilty to let much time pass between visits, and I actually look forward to seeing her. She maintains my sanity, and indulges my periodic paranoia. Once when I became convinced that a small cyst below my left breast was more than "a big nothing," she squeezed me in at the end of her long day, removed it, and sent it to pathology just to reassure me. Of course, it was a big nothing. But I didn't have to wait weeks to get that confirmed.

Yet I still got tongue-tied when I tried to explain why I have a breast surgeon. Sometimes I feel like it's morbid to have a doctor ready to treat a disease I may never have. On the other hand, breast cancer already is my disease. Its assault on my mother, who had her mastectomy when I was 12, shaped me profoundly. So did her culturally bred sense that she had a shameful illness -- both cancer and breasts were something you whispered about -- which kept us both from getting the emotional help we needed. This society draws a cruel line between the well and the sick, and the stigma of serious illness is part of its pain. I feel I know a little of the terrain on the other side of the line now, and that helps me, practically and psychologically.

My fear has become manageable. I've limited my worrying about getting breast cancer to five minutes before my appointments. Then my surgeon walks in, and we chat excitedly, maybe a little maniacally, the whole time she examines my breasts. I keep up my end of the conversation -- my daughter, my writing, my boyfriend -- while searching her face for clues: Did she find anything? Am I all right? She helps me up off the table and tells me I'm perfect. We finish up our conversation and make plans for our next visit, like busy girlfriends penciling in their next lunch date.

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