Aug. 21, 2000 -- Breast cancer runs in Vicki Small's family. Her mother died of the disease; her sister has battled it. So three years ago the 40-year-old New Jersey woman got tested for the breast cancer gene. Doctors searched for mutations in her DNA, which -- if present -- could give her up to an 80% chance of inheriting the disease.
Although Small was healthy with no hint of cancer, her tests came back positive. She agonized for weeks, then chose a drastic measure that many women in good health would find unthinkable: She decided to have her breasts and ovaries surgically removed. "Although I wanted to have more children, I figured it would be better to be alive for the two I already had," she says.
By Diane Umansky
When many of us are peacefully slumbering, Paula McClure, the owner of a spa
in Dallas, is often jolted awake by what she refers to as her sleep
"The committee meets in my head at 3 a.m., and we run down a list of
problems: all the things I didn't get done that day, people I didn't call back,
decisions I'm worried about," she says.
The dark-of-the-night fretting may follow McClure into the daytime hours,
often making her feel emotionally paralyzed. "My...
Now that tests are available to identify mutations of the breast cancer gene, known as BRCA, women can find out whether they are at greatly increased risk of developing the disease -- even if they're cancer-free so far. The question is: What should they do with that knowledge? According to a study published in the June 10, 2000 issue of the Lancet, 50% are choosing preventive double mastectomies, meaning that both of their breasts are removed.
That decision comes with a lot of sleepless nights and troubling questions these women must grapple with. It's one that will radically change their lives. "You're taking away a part of the female body," says Small. "But I saw what my mother and sister went through, and I didn't want to repeat that."
Women at High Risk
Indeed, a woman makes the decision to have her breasts removed in the face of horrifying odds. Although mutations of the BRCA-1 or BRCA-2 genes do not guarantee that a woman will develop breast cancer, they substantially raise her risk. Women with BRCA mutations run a lifetime risk as high as 4 in 5 of developing the disease, says Victor Vogel, MD, director of the Comprehensive Breast Program at the University of Pittsburgh Cancer Institute/Magee Women's Hospital. Their lifetime risk of developing ovarian cancer is also elevated to 2 in 5. In comparison, about 1 in 8 women in the general population will develop breast cancer in their lifetimes, many in old age, and only 1 in 100 will have ovarian cancer, says Vogel.
Once a woman finds she carries one of the mutations, she is left with a difficult choice, he says. She can hope for the best and get frequent mammograms. She can take the cancer-preventive drug, tamoxifen, which has been shown to reduce a woman's risk of developing breast cancer by about 50%. She can have only her ovaries removed, which also reduces the risk of breast cancer by about 50%. Or she can opt to have her breasts, and often also her ovaries, removed.
A study published in the January 14, 1999 issue of the New England Journal of Medicine found that women with a strong family history of breast cancer (not specifically those who tested positive for the breast cancer gene) reduced their risk of developing the disease by 90% if they had both breasts removed. Though having a double mastectomy is not an absolute guarantee that a woman will stay cancer-free, the 10% who did develop tumors after the surgery may have had undetected cancers at the time of the operation, Vogel says.