Study reveals major gaps in cancer risk assessment before gender-affirming mastectomy

Researchers from Boston University Chobanian & Avedisian School of Medicine have identified significant shortcomings in how breast and chest cancer risk is assessed in transgender patients preparing for gender-affirming mastectomy, commonly known as "top surgery."

According to the study, many transgender and gender-diverse (TGD) individuals undergo surgery without receiving adequate information about how the procedure may influence their lifetime risk of breast or chest cancer. In some cases, patients are also not evaluated for inherited cancer predisposition, which could affect both surgical planning and future cancer prevention strategies.

The researchers found that several systemic barriers limit the integration of cancer risk assessment into pre-surgical care. These include the absence of clear institutional responsibility, inconsistent evidence-based guidelines, non-standardized care pathways and limited access to genetic counselling within multidisciplinary gender-affirming care teams.

The findings are consistent with an earlier companion study in which transgender patients reported receiving insufficient information about cancer risks before and after surgery.

"Every person—transgender or cisgender—deserves accurate information about their cancer risk and access to preventive care. Currently, transgender people are often diagnosed with cancer at more advanced stages than cisgender individuals," said lead author Kim Zayhowski, a genetic counsellor and assistant professor at Boston University Chobanian & Avedisian School of Medicine.

She emphasized that healthcare systems should not rely solely on individual clinicians but instead establish institutional frameworks to ensure that transgender patients receive comprehensive cancer risk information before making surgical decisions.

The research included two qualitative studies. In the first, investigators interviewed 16 transgender patients about their experiences with breast and chest cancer risk assessment and top surgery. The second study involved interviews with 20 healthcare professionals, including primary care physicians, genetic counsellors, oncologists and plastic surgeons, to examine current clinical practices and existing barriers.

According to the authors, the results indicate that many healthcare professionals are willing to provide better care but lack standardized protocols for discussing cancer risk, post-surgical screening and the potential need for additional tissue removal in patients with hereditary or family-related cancer risk.

To address these challenges, the research team is developing CHESTcare (Cancer & Hereditary Risk Education & Support for Transgender and Nonbinary Individuals), an online educational toolkit designed to support informed decision-making about breast and chest cancer screening in the context of gender-affirming care. The resource will include educational materials for both patients and healthcare providers.

The study was published in the journal Breast Cancer Research and Treatment.