Moffitt Cancer Center study identifies disparities in breast cancer risk management among those genetically susceptible to the disease

If you are a young woman diagnosed with the most common form of inherited breast cancer due to a mutation in the BRCA1 or BRCA2 gene, what would you do to manage your high risks for developing cancer in the future? The answers seem to vary depending on whether you are white, Hispanic or black.

That's the takeaway from a study conducted by researchers at Moffitt Cancer Center - the first to compare risk management practices across a large population of black, Hispanic and non-Hispanic White breast cancer survivors, which included BRCA-positive women from each of these populations. The Moffitt findings are part of an abstract presentation given this week at the American Society of Clinical Oncology Annual Meeting in Chicago.

In the study, Moffitt researchers surveyed a racially and ethnically diverse group of over 1,600 women age 50 or younger who were diagnosed with invasive breast cancer between 2009 and 2012, recruited across Florida through the State Cancer Registry. Over half of them (917) had been tested for the BRCA1 or BRCA2 genes linked to hereditary breast and ovarian cancers, and 92 were shown to have a mutation in one of these genes.

BRCA carriers, like actor and activist Angelina Jolie, often consider surgery to minimize their future cancer risks, such as bilateral mastectomy to remove the breasts or removal of the ovaries (oophorectomy). But the Moffitt study, with board-certified geneticist Tuya Pal, M.D., as lead author, showed significant differences in how white, Hispanic and black women acted on their BRCA-positive mutation results.

Removing the ovaries, which offers a demonstrated survival advantage among BRCA carriers, was most commonly chosen by BRCA-positive survey respondents who were white (71%) and Hispanic (85%), yet less than a third (32%) of black respondents opted for this surgery.

As for bilateral mastectomy, rates were significantly higher for white (94%) and Hispanic (85%) respondents, compared to black respondents (68%). However when breast MRI screening and active treatment was considered, almost all carriers across the three groups adhered to recommended cancer risk management guidelines.

After controlling for factors such as age at enrollment, time since diagnosis, income, family history of breast and ovarian cancers, and private insurance at diagnosis, white and Hispanic women were still significantly more likely to choose removal of the ovaries and/or breasts in managing their cancer risk.

"People who get genetic testing don't benefit if they don't act on that information, whether by being proactive about their own health or by sharing that information with family members," says Pal. "We need to understand the reasons for this disparity so that we can develop interventions to address them."

Pal says larger studies are needed to further understand the variability in risk management across underserved populations. She also notes several influencing factors that occurred post-survey in 2012, a year that saw the Supreme Court uphold the Affordable Care Act and changes in the U.S. health care system that impacted access to care. The study also predates publicity surrounding Jolie's mastectomy (2013)/oophorectomy (2015), and the reduction in the cost of BRCA testing since patents were struck down by the Supreme Court in 2013.

The research was supported by grants from the Florida Department of Health's Biomedical Research Program (IBG-10-34199) and the American Cancer Society (RSG-11-268-01-CPPB).