Five months after actress Angelina Jolie announced that she had had a double mastectomy to prevent breast cancer, hereditary-cancer clinics are reporting a sharp increase in doctor referrals and phone calls from women asking for genetic testing.
The B.C. Cancer Agency’s hereditary-cancer program has seen a 60-per-cent surge in referrals since May, “which is large for us,” said the program’s medical director, Dr. Barb McGillivray. “I understand that’s true of most of the hereditary-cancer programs in [Canada],” she said.
McGillivray attributed much of the increase to Jolie’s public account of undergoing breast-removal surgery after discovering that she was a carrier of a faulty BRCA1 gene. Mutations of BRCA1 and BRCA2 genes are associated with high risks for breast and ovarian cancers. Jolie’s mother died of ovarian cancer in 2007, and her aunt died of breast cancer in May.
Jolie’s celebrity influence has prompted more women to ask themselves whether breast and ovarian cancers run in their own families, said Susan Armel, a senior genetic counsellor at the Princess Margaret Cancer Centre in Toronto. In addition, she said, more women who do not have obvious risk factors, such as a familial history, are asking to be screened “because Angelina Jolie put it out there.”
Provincial health plans cover the cost of genetic testing in patients who meet criteria including multiple cases of breast or ovarian cancers in close relatives. The coverage does not apply to women who do not have a familial history or a cancer diagnosis at a young age since they are considered at low risk for the mutations.
Genetic testing is not cheap. At private labs in other countries, the cost of screening for BRCA mutations ranges from $1,000 to $3,000. Nevertheless, some low-risk patients are so concerned about hereditary cancers that they are willing to pay out of their own pockets to get results from labs in Europe and in the United States, Armel said.
Specialists are divided over whether BRCA testing should be offered to all women.
“There’s a kind of a tension between a public-health approach [in favour of nationwide testing] and a genetic-counsellor approach, which is more of a personalized, individual risk assessment,” said Dr. William Foulkes, a cancer geneticist at McGill University and Montreal’s Jewish General Hospital.
Critics of nationwide testing note that most women’s chances of having BRCA mutations are small. An estimated 1 in 400 people in the general population carries BRCA mutations. In Ashkenazi Jewish people, however, 1 in 40 is a carrier. BRCA mutations are also more common among people of Norwegian, Dutch and Icelandic descent.
Provincial screening guidelines take factors such as ethnicity into account. But Dr. Steven Narod, director of the Familial Breast Cancer Research Unit at the Women’s College Research Institute in Toronto, estimates that 20 per cent of women with these mutations do not meet the provincial criteria for testing even though they are carriers.
“That doesn’t mean the [provincial] guidelines are wrong,” given the current high cost of screening, he said. “It just means that we don’t have a cheap enough test.”
The price of testing is expected to drop in the wake of the U.S. Supreme Court’s ruling in June that genetic screening for BRCA1 and 2 cannot be patented. Tests estimated to cost as little as $50 are in development at labs in Ontario and British Columbia. But their availability to the public will depend on how Canada responds to the U.S. court’s decision and how Canadian health-care authorities regulate BRCA screening tests, experts say.
Narod also noted that genetic counselling in BRCA screening drives up the cost. Patients can receive information about risk factors and cancer prevention through fact sheets and other means, he said. “It shouldn’t be from one-on-one counselling.”
But according to McGillivray, genetic counsellors play an important role in helping patients weigh their cancer-prevention options, which may include an MRI or mammogram every six months, or surgical removal of breasts, fallopian tubes and ovaries.
Of the patients referred to the B.C. Cancer Agency’s hereditary-cancer program since May, about 13 per cent will test positive for a BRCA mutation, McGillivray said. For a small percentage of other patients, testing will reveal a genetic variation of “unknown significance” – an inconclusive result that can be just as disturbing as a positive result, she said.
Specialists including McGillivray say it’s too soon to tell whether Jolie’s medical decision has encouraged more women to choose a preventive mastectomy. But in light of the growing public awareness of hereditary cancers, many say they have welcomed the “Angelina effect.”