Do I Keep My Breasts?
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.
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.
Not the Only Option
While slightly more than 50% of women who learned that they carried one of the BRCA mutations opted for a double mastectomy in the Lancet study, it's clearly not the only option. Even when breast cancer does occur, tumors in women with BRCA mutations aren't any more virulent than cancers in other women, says Anne Blackwood, MD, an assistant professor of medicine and epidemiology in the division of hematology and oncology at the University of Pennsylvania Medical Center in Philadelphia. If the cancer is caught early, a simple lumpectomy -- where doctors remove the cancerous mass but leave the rest of the breast intact -- may suffice.
If other choices exist, then, why have so many women opted to have their breasts removed? Often the decision comes down to whether a woman can live with the knowledge that she has a good chance of developing breast cancer, says Linda Vahdat, MD, an assistant professor of medicine at Columbia Presbyterian Medical Center in New York City. "What matters is your level of fear," she says. "If you have a high level of fear, you probably should have a prophylactic [preventive] mastectomy. If you can put it behind you and go on with your life, you may want to do something else."
Women have to do what will give them the least amount of stress, says Vogel. Once they know about their elevated risk, some simply can't escape the gnawing fear. "Women have told me, 'I want them gone. Every day I wake up and wonder if today is the day I will develop breast cancer,' " he says.