Genetic mutations or a strong family history of breast cancer can prompt some healthy women to have their breasts removed to avoid the disease themselves. But for others, fear alone is reason enough for surgery.
The risk of getting breast cancer is about 80 per cent for women with genetic mutations in genes called BRCA1 and BRCA2, combined with a strong family history of the disease, and about 25 per cent for women with a strong family history alone. In the general population of women, the risk is about seven per cent.
One study showed that prophylactic mastectomy — surgical removal of healthy breasts — reduces the risk of a subsequent breast cancer by 90 to 100 per cent in women known to be carriers of BRCA1 and BRCA2 mutations. Breast reconstruction is often performed at the same time the breasts are removed, and both the mastectomy and reconstruction are paid for publicly.
But some women don’t meet the criteria for genetic testing in their home province. Others may not pursue the tests because of the limitations of genetic testing. It can’t determine definitely who will and who won’t get cancer, and having the test may make it harder for women to qualify for extended health or life insurance.
Dr. Steven Narod, director of the Familial Breast Cancer research unit at Women’s College Hospital in Toronto, says there is no rule that women need genetic testing and no guidelines that restrict prophylactic mastectomies. “Most women who want the procedure have a BRCA1 or 2 mutation and a strong history of breast cancer. But some women are just very afraid of cancer. They’re thinking of cancer every day. They have psychological discomfort. The surgery can directly alleviate anxiety, sleeplessness and depression.”
However, he adds, “If the woman is not at that high risk and is having surgery primarily to relieve anxiety, then consultation with a psychologist is a good idea.”
Kelly Metcalfe, an assistant professor of nursing at the University of Toronto, is working with Narod on a study of women who have had prophylactic mastectomies. “I would like to see BRCA testing a prerequisite of surgery,” she says. “Right now, anyone can have it. Some women have prophylactic mastectomies because of a cancer phobia. We need to look at it critically, on a case-by-case basis.”
But not all women with a cancer phobia qualify for genetic testing. Depending on the province, it may be limited to women with a strong family history of cancer.
Dr. Brent Schacter, an internal medicine specialist at the University of Manitoba and CEO of the Canadian Association of Provincial Cancer Agencies (CAPCA), estimates there are between 50 and 100 prophylactic mastectomies performed annually in Canada.
He says the CAPCA has taken no official position on prophylactic mastectomy and he considers it a very personal decision. But he expresses concern that the decision could be made without a full understanding of the risks and consequences. If women are proceeding with the surgery without BRCA testing because they fear cancer, then it’s “a real problem. I don’t know how to get around it except to broaden, somewhat, the criteria for testing if you have someone who has a phobia.”