Choosing the knife

Healthy women at high risk for breast cancer are choosing to have both breasts removed, even while doctors are advocating less invasive treatments for those who are already sick

By Naomi Mendelsohn

Jun 20, 2000 | Rarely in human history has a single lump of flesh so completely saturated our cultural landscape. From Cleopatra's ill-fated bosom to Pamela Anderson Lee's supersize specimens, nothing says woman more than a good set of knockers.

Even in our "enlightened" 21st century, when most gender markers have gone the way of the corset and the chastity belt, breasts are still viewed as the telltale sign of femaleness. How else to decipher the woman beneath trousers and a buzz cut? Breasts. Breasts. Breasts. They are everywhere and everything. Men are captivated by them. Drag queens covet them. And women, well, we just have to deal with them. And deal with them we do, sometimes by any means necessary.

"I'll just wait until I have kids," says Debbie Winn, 25. "Then, chop chop."

While the thought of a breast-free life may be inconceivable for most women in their 20s, it is virtually the only choice for Winn. Her genetic Rubik's cube reveals cancer on all its mixed-up sides: Winn's mother died of cancerous brain tumors that had metastasized to her lungs, breasts and other vacant body parts. Winn's grandmother died of breast cancer and two aunts were diagnosed with the same scourge.

Winn would rather have both her breasts removed than fall prey to her genetic kismet. As far as she sees it, a prophylactic mastectomy is a way, the only way, to beat the odds that are so startlingly "racked" against her.

A 1999 study from the Mayo Clinic -- the only comprehensive study on prophylactic mastectomy to date -- followed 639 women who had this procedure done between 1960 and 1993. According to original projections, 37 of the moderate-risk women would develop breast cancer and 10.4 would die from the disease. But at the close of the study, only four women had actually developed breast cancer and none of them had died. There were similar findings in the high-risk group: Three women had developed breast cancer, as compared with 39 percent of the control group. Overall, the study revealed a dramatic 90 percent reduction in risk. Such statistics represent a choice between life and breasts, and Winn, quite emphatically, has chosen life.

"For me, I just think how could I not," says Winn. "It's the responsible thing to do. I haven't had any genetic testing, but I know I'm at high risk," she says. "As far as I'm concerned, apart from nursing, I'm not very attached to my breasts. They sit here and they look cute in tops, but they're not functional. If I had to cut off a body part, they are the most useless ones."

If this seems like an overly pragmatic attitude toward this historically "essential" part of the female anatomy, Winn contends that she defines her sexuality in myriad ways, not just through her cup size. Given a choice between life and breasts, she says, there is no choice.

Winn is not alone. According to a Dutch study published last week in the Lancet, of 198 women who tested positive for a genetic predisposition to breast cancer, 51 percent opted to have both breasts removed as a means of prevention. But these findings -- and Winn's decision -- have unsettled those doctors who are striving to treat patients already suffering from breast cancer with less extreme measures.

"There is an irony here," says breast cancer guru Susan Love, author of "Dr. Susan Love's Breast Book" and other women's health books. "The treatment for breast cancer is lumpectomy. The only time we do mastectomy is if the lump is so big we can't get it out otherwise. We preserve the breast if it will work as well for treatment."

Love cites what has become the common trend in breast cancer oncology: less invasive, more focused treatments for existing cancer and preserving the breast at -- almost -- any cost.

Yet women keep deciding to have their breasts removed before any signs of cancer have appeared, even in the face of other preventive treatments such as cancer drugs Tamoxifen and Raloxifene, which have recently been proved to significantly reduce the risk of developing breast cancer.

"I think it's a drastic thing to cut off a body part in order to prevent a disease," says Love. "There are very few organs one would do that to. It shows that you don't understand a disease."

But as a registered nurse, Winn is all too familiar with the insidious ways of diseases like cancer. She has also witnessed the devastating treatments and imperfect science of medicine.

Winn's mother, also a nurse practitioner, suffered from severe headaches for years. Though she practically "lived" in the hospital, never once did the resident physicians do a CT scan or an MRI on her head. By the time her headaches became unbearable, it was too late. She had five huge inoperable brain tumors and died six weeks later.

"Because of prophylactic mastectomy, breast cancer is one of the few things that you have a bit of power and control over," Winn says. "The others just kind of creep up on you. Aside from taking good care of yourself, there's not much more that you can do."

Even skeptics of prophylactic mastectomy like Love won't discount the power of fear. "I think there are some women who are just so anxious that they can't tolerate it," Love says. "It's more of a psychological thing."

And the mind can certainly play funny tricks on people.

Next Page: Driven mad with wondering when cancer will strike

• View blog reactions