Trans top surgery patients aren't getting enough info about breast cancer screening, study says

This story originally appeared on Them.

A new study published in the journal Breast Cancer Research and Treatment found that healthcare providers may not be providing clear and consistent information about breast cancer risk assessment to people seeking gender-affirming top surgery.

Although the study is based on interviews with only 20 healthcare providers, the researchers focused on those with experience working with transgender and gender-diverse patients, looking at an array of regions and areas of expertise including oncologists, plastic surgeons, primary care providers, and cancer genetic counselors.

In those interviews, they found several common themes. The first is that many providers did not know who should be responsible for identifying patients who needed to be screened for breast cancer risk. One genetic counselor said they “defer further cancer screening to their specialty care team, not me” while an oncologist said “the surgeon will hopefully do that screening.”

At issue here is the fact that although a total double mastectomy significantly reduces breast cancer risk, the vast majority of gender-affirming top surgeries leave tissue in place for aesthetic reasons. In other words, those undergoing top surgery still need to consider their breast cancer risk — and if no providers flag this because they are deferring those conversations to each other, patients can fall through the cracks.

Healthcare providers also said they found it confusing to navigate competing sets of guidelines from medical associations, which meant that it was often left to individual “champions” to educate patients on the issue. Additionally, because many transmasc and nonbinary people seek top surgery “earlier than population breast cancer screening age,” some healthcare providers feel it is more challenging to discuss lifetime risk. One genetic counselor, for example, highlighted the difficulty of cases where younger patients might need to consider hereditary risk factors, like the BRCA1 and BRCA2 genes.

“We have talked to patients about, you could do a normal top surgery and then if you wanted to do something preventative later, but we’re typically not in favor of that,” that counselor said. “We’d rather you not have multiple surgeries and potentially be at risk.”

The researchers — who come from an array of educational institutions and healthcare providers, primarily clustered in Boston — recommend “urgent, coordinated changes at multiple levels of healthcare delivery” to address these gaps and improve “oncology outcomes.”

To them, that looks like “establish[ing] clear institutional ownership” over risk evaluation, developing “unified, evidence-based guidelines,” and ensuring that postoperative surveillance includes “evalation of residual breast/chest tissue.”

“These actions are necessary to enhance cancer prevention, promote inclusive … care, and transform precision oncology for TGD patients,” they conclude.

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