Obstacle or death sentence? How women’s experiences shape views of breast cancer

A woman’s memories of breast cancer—whether they stem from a family member’s diagnosis or a close friend’s battle—could significantly shape that woman’s choices about her own preventive care, researchers reported in the Journal of Health Psychology.

All American women see a 12 percent risk of developing the disease within their lifetime. The American Cancer Society predicts that 2018 will bring 266,120 new cases of breast cancer to the U.S., as well as 40,920 female deaths from the illness.

But that’s just most women, lead author Tasleem Padamsee, PhD, and colleagues at the Ohio State University wrote. Women genetically predisposed to breast cancer see between a 20 percent and 80 percent elevated risk of developing the disease. Though women have the preventive options of bilateral prophylactic mastectomies, oophorectomies, chemoprevention and enhanced care like routine breast exams, mammograms or MRIs, those often-invasive options can be intimidating.

“Each method is used far less frequently than clinical guidelines recommend, but the decision-making processes that underlie this pattern are poorly understood,” Padamsee et al. wrote. “Prior research has revealed important but complex relationships between family history and prevention decisions.”

In an attempt to decode these thought processes, Padamsee and her team interviewed a cumulative 50 black and white women who were at an increased risk for developing breast cancer to unpack why some women choose to take suggested preventive measures while others don’t. Questions were open-ended, they wrote, to ensure researchers’ bias didn’t shine through, and cancer experience was categorized as either abstract, generalized, practical or traumatic.

“We wanted to understand what information high-risk women are using to make their choices about genetic testing, prophylactic surgery and medication and we were able to learn a lot by listening to how each woman told her personal story,” Padamsee said in an OSU release.

In the same release, she said she was “somewhat surprised” by the amount of influence a loved one’s experience with cancer seemed to have on her study population’s own perceptions of prevention.

“Women who had traumatic experiences were more likely to view breast cancer as a death sentence, while those with more positive experiences perceived it as a hardship, but one that could be overcome,” Padamsee said. “And the women who had a trauma are the one who were really willing to consider more aggressive options.”

The researchers found that women who hadn’t lived through a traumatic cancer experience with a loved one were open to ideas of genetic testing and mammographies, but were uninterested in more aggressive preventive treatments unless genetic testing showed a predisposition for breast cancer.

The authors wrote that one barrier to complete preventive care could be the financial burden of expensive tests, which aren’t accessible to everyone.

“We need to work on making sure more women have access to those tests,” she said. “My goal is to empower women so that they know their risks and their options and can make the healthcare choices that are consistent with their own values.”