Tuya Pal, MD
The research identified disparities in receipt of BRCA testing between non-Hispanic white women, Hispanic, and black women, with the latter being the least likely to have the testing. Likewise, black women who were BRCA carriers were less likely to undergo risk-management practices compared with their white and Hispanic counterparts.
“We need to understand the reasons for these findings,” said lead study author Tuya Pal, MD, a clinical geneticist at the Moffitt Cancer Center in Tampa, Florida. Ultimately, it’s the patient who must decide whether to have genetic testing and take prophylactic measures for risk management, Pal said.
A number of factors may impact this decision, including cultural and economic circumstances, lack of information, and especially provider recommendations, which, Pal said, previous studies have indicated are very influential.
BRCA-mutation carriers have a high (60%-70%) lifetime risk of breast cancer, at least a 50% risk of developing a second breast cancer, and up to a 44% risk of ovarian cancer, Pal noted in presenting the study’s findings during an ASCO press conference.
Using the Florida State Cancer Registry, researchers recruited women aged 50 or younger diagnosed with invasive breast cancer between the years 2009 and 2012 (N = 1621), and they were asked to complete a baseline survey. Of the total cross-sectional study cohort, 440 women were black, 284 were Hispanic, and 897 were white.
Overall, 917 participants reported having BRCA testing, with similar uptake of testing among Hispanic and white women (62% and 65%, respectively), but only 36% of black women had the genetic test (P = .025). “Even after controlling for meeting high-risk criteria based on national practice guidelines, economic status-related variables, and provider referral, we still had significant differences between black women and Hispanic and white women,” Pal said.
Among the subset of BRCA mutation carriers (n = 92), the researchers found differences in uptake of risk-reducing bilateral mastectomy (RRM) and risk-reducing prophylactic salpingo-oophorectomy (RRSO) among the three groups. Sixty-eight percent of black women had RRM, compared with 85% of Hispanic women and 94% of whites.
Pal added that because mastectomy is not the only form of breast cancer risk management, investigators also looked at the proportion of women who had screening for breast cancer via MRI: 96% of the black women with the BRCA mutation were screened, compared with 98% of their white counterparts and 100% of Hispanic carriers.
In the area of RRSO, Pal reported that 32% of black women had the procedure, versus 85% of Hispanics and 71% of white participants (P = .02). Again, even after controlling for age, time since diagnosis, income, family history, and insurance status, she said, “we still had statistically significant results between Hispanic and white women compared with black women, where the rates were lower.”
Pal noted that, “it is important to remember that our findings require confirmation, given that even though we started from a large sample, there were a limited number of [BRCA] carriers in our study, and the study was a snapshot in time, so it will be of interest to see over time what happens with these groups of women and if there is an improvement in their cancer risk management.”
Panel moderator and ASCO Expert in breast cancer Patricia Ganz, MD, underscored this point in her remarks: “A lot of things have happened since 2009-2012,” including the fact that many more women are asking their doctors about their risk, due to the “Angelina Jolie effect” created when the actress publicly shared her decision to have prophylactic mastectomy and oophorectomy because of her BRCA status and family history.
“In addition, our guidelines have changed,” Ganz continued. “During that time period, we were much more focused on family history. Now our guidelines have shifted quite a bit so that we are often testing almost anyone under age 50,” she said, noting that now many oncologists and surgeons, when they see a young patient with breast cancer, will recommend testing.
Nevertheless, Pal’s research raises important questions for further study, especially identifying the factors that influence why some groups of women are more likely to pursue genetic testing and then follow up with prophylactic risk management. Pal acknowledged that while several practice-changing events have occurred since her study, questions remain, for example, about the impact of the Affordable Care Act, as well as the substantially lower costs of testing when patent restrictions on the BRCA test were lifted. “We used to pay more than $4000 for BRCA testing; we can now get that as low as $200-$250, with multiple genes included,” she said.
In addition, Pal asked, “While the Angelina Jolie disclosure increased awareness, has that equally increased awareness across all populations? I’m not sure about that. I don’t think anyone is.”
“We really need to understand the reasons why women are making these decisions,” Pal concluded. “Are they being given the opportunity to make an informed decision, or are other factors coming into play so that they are not getting the information they need? Our study highlights the need for interventions to ensure access to testing, as well as cancer risk management practices, across all populations.”
Pal T, Cragun D, Lewis C, et al. Disparities in cancer risk management among BRCA carriers across a diverse sample of young black, Hispanic, and non-Hispanic white breast cancer survivors. J Clin Oncol. 2016;34(suppl; abstr LBA1504).