Black women who learn they have a high genetic risk of ovarian and breast cancer are less likely than white or Hispanic women to have their healthy ovaries or breasts removed to lower their risk of developing those cancers, researchers reported on Monday at the annual meeting of the American Society of Clinical Oncology in Chicago.
Mastectomy and oophorectomy made headlines when actor-director Angelina Jolie Pitt, after learning she had a mutation in a BRCA cancer-susceptibility gene, announced that she had the operations in 2013 and 2015, respectively.
Since then, rates of mastectomy among BRCA-positive women more than doubled in some areas — a phenomenon dubbed the “Angelina Jolie effect.” (Although often called prophylactic surgery, the operations only lower the risk of cancer, and so are more accurately referred to as risk-reducing mastectomy or oophorectomy.)
For the ASCO study, epidemiologist Dr. Tuya Pal and her colleagues at the Moffitt Cancer Center in Tampa surveyed breast cancer patients in Florida, all younger than 50 and diagnosed from 2009 to 2012.
Of 1,570 women, 91 carried BRCA mutations — which have been estimated to raise the lifetime risks of breast and ovarian cancer by up to 90 percent and 60 percent, respectively. (In women without these mutations, the risks have been pegged at 12 percent for breast cancer and 1.5 percent for ovarian cancer.)
The responses of the BRCA-carriers varied significantly, Pal’s team found: 83 percent of Latinas had their ovaries removed, compared to 71 percent of non-Hispanic whites and 32 percent of black women. The mastectomy differences were less stark: 94 percent of white women opted for it, as did 83 percent of Latinas, and 67 percent of black women had that surgery.
Many of the women who rejected mastectomy opted for frequent mammograms or MRIs, which can also reduce the risk of breast cancer in BRCA-positive women. In contrast, there are no good early detection methods for ovarian cancer, which is usually fatal.
It’s not clear if black women were less likely to be offered risk-reducing ovarian surgery (as medical guidelines call for), or whether they were more likely to reject it. “If patients were given the right information and chose not have have their ovaries removed, that’s OK, as long as if was an informed decision,” Pal said. “If they weren’t, that’s where the concern arises: They’re not getting the information they need” about reducing their risk of developing ovarian cancer.
The new study fits with other recent research about differences in rates of risk-reducing mastectomy. A study published last year found that after a diagnosis of cancer in one breast, 26 percent of US women aged 45 and younger in 2011 chose to have the other breast removed also (up from 4 percent in 1998). The rates were 30 percent among white women, 18 percent among Latinas, 16 percent among African-Americans, and 15 percent among Asians. The white/minority differences existed regardless of a woman’s economic circumstances, where she lived, or what kind of medical facility (academic, community, for-profit) treated her.
But Pal’s is the first study to compare prophylactic mastectomy and oophorectomy rates after a BRCA diagnosis, not a cancer diagnosis alone.
Other clinicians have also seen ethnic differences in response to BRCA. At St. Mary’s Hospital in Manchester, England, “we do see a disparity in referrals [for prophylactic surgery], with far fewer South Asian and Afro-Caribbean [women] than should be represented from the local population,” said Dr. Gareth Evans, a medical geneticist at the University of Manchester, who helped coin the “Angelina Jolie effect.”
“In general, there are cultural influences on the decision” to remove healthy breasts and ovaries, said Joy Larsen Haidle, a genetic counselor at the Humphrey Cancer Center in Minneapolis and past president of the National Society of Genetic Counselors.
Those influences include whether a community views mastectomy as disfiguring, or even mutilating; how supportive spouses and family are of women who choose to have healthy breasts or ovaries removed; and whether a woman can afford to pay for breast reconstruction.
If she can’t, and if she doesn’t have insurance coverage for it (black women are less likely to be insured), she might be less likely to choose it. But the racial gaps in the rates of risk-reducing mastectomy and oophorectomy might have closed since Jolie’s announcements, which made the public “much more knowledgeable about” the operations, Haidle said, and also “more accepting and supportive.”