Today, 21 percent of black women diagnosed with breast cancer compared with 8 percent of white women don’t survive five years past their diagnosis. But what happens to the African-American women who do survive? According to a recent study published in Supportive Care and Cancer, a gap in care after the initial cancer treatment is completed can continue long after a patient is cured, reports.

For the study, researchers at the College of Nursing at Villanova University held eight focus group sessions for 60 African-American breast cancer patients. The scientists used findings from the focus groups to modify questions for a survey about problems faced by breast cancer survivors that they mailed to more than 1,000 African-American women who beat the disease. After 297 women responded, researchers grouped the survivors’ concerns into four categories: emotional, physical, resource and sexual problems.

One of the main concerns of women in each focus group was medical mistrust. “They gave examples of overhearing someone in the waiting room, who happened to be white, discussing information about management of their disease that the participant had not received,” said Patricia K. Bradley, PhD, RN, an associate professor in the College of Nursing at Villanova University and of the study’s authors. “[This leads] to a sense of mistrust about the information they were given.”

Researchers also noted that younger black women, those with additional medical conditions and individuals who expressed distrust of the medical system had a higher risk of post-treatment problems overall.

To better connect with African-American breast cancer survivors, Bradley’s team suggested that health providers make sure to ask women whether they have questions specific to their care and culture. In addition, researchers encouraged women to advocate for themselves, join support networks and not be afraid to get second opinions. 

Click here to learn more about why black women may die of breast cancer at a higher rate.