Transgender and gender diverse patients frequently undergo gender-affirming mastectomy, commonly known as top surgery, without receiving vital breast and chest cancer risk assessments beforehand, according to a study published in Breast Cancer Research and Treatment. Researchers at the Boston University Chobanian & Avedisian School of Medicine found that systemic healthcare barriers, past negative experiences, and a lack of standardized clinical pathways prevent patients from understanding their lifelong cancer risks and screening options prior to undergoing the surgical procedure.
Systemic Barriers in Transgender Oncology Care
Transgender and gender diverse individuals face persistent healthcare disparities across the oncology spectrum of care. According to Boston University researchers, these inequities stem from a combination of systemic hurdles, hostile historical healthcare environments, and sociopolitical climates. Patients undergoing gender-affirming mastectomy face distinct challenges regarding breast cancer risk evaluation. Currently, individuals can proceed with top surgery without knowing how the operation alters their lifelong cancer risk or whether they carry genetic predispositions that could impact their surgical choices.
“Every person – transgender or cisgender – deserves clear information about their cancer risk and access to prevention,” says Kim Zayhowski, MS, CGC, corresponding author, genetic counselor, and assistant professor of medical sciences & education at Boston University Chobanian & Avedisian School of Medicine. “As it stands, trans people are diagnosed with cancer at later, more dangerous, stages than cisgender people.”
Did you know? Patients in a prior companion study reported a distinct lack of clear information regarding breast and chest cancer risks both before and after undergoing gender-affirming mastectomy.
Healthcare Professional Perspectives and Institutional Shortfalls
To identify the root causes of these gaps, researchers conducted two parallel qualitative studies. In the initial study, authors interviewed 16 transgender patients regarding their top surgery and risk assessment experiences. In the subsequent study, researchers interviewed 20 healthcare professionals—including primary care physicians, genetic counselors, oncologists, and plastic surgeons—to evaluate current clinical practices and obstacles.
According to the study findings, healthcare institutions are fundamentally unequipped to serve this patient population adequately. While individual clinicians often want to help, standard conversations regarding post-surgical screening or tissue removal based on familial or genetic cancer risks rarely take place.
“We’re calling on healthcare institutions and organisations to move beyond reliance on individual provider commitment and invest in the institutional infrastructure necessary to guarantee that trans patients receive comprehensive cancer risk information to make truly informed decisions about their care,” explains Zayhowski.
Proposed Solutions and the CHESTcare Toolkit
To address these identified impediments, the research team highlights the necessity of clear institutional accountability, harmonized evidence-based guidelines, standardized care pathways, and the integration of genetic counseling into multidisciplinary gender-affirming care teams.
Additionally, the study team is actively developing an online resource named CHESTcare (Cancer & Hereditary Risk Education & Support for Transgender and nonbinary individuals). The toolkit aims to integrate hereditary risk education with decision-making support for breast and chest cancer screening within the context of gender-affirming care. The platform is designed to house dedicated resources for both patients and healthcare providers.
Frequently Asked Questions
What is the primary risk identified in transgender patients seeking top surgery?
Patients frequently undergo gender-affirming mastectomy without a pre-surgical breast or chest cancer risk assessment, meaning they may lack crucial information regarding genetic predispositions or how the surgery affects lifelong screening.
Why do transgender patients experience disparities in cancer care?
According to researchers, disparities are driven by systemic healthcare barriers, past harmful experiences in medical settings, challenging sociopolitical climates, and a lack of standardized clinical pathways tailored to transgender and gender diverse individuals.
What solutions are researchers proposing for clinicians?
Study authors recommend establishing clear institutional accountability, harmonized evidence-based guidelines, standardized care pathways, and embedding genetic counselors within multidisciplinary gender-affirming care teams.
What is the CHESTcare toolkit?
CHESTcare (Cancer & Hereditary Risk Education & Support for Transgender and nonbinary individuals) is an online toolkit currently in development to provide cancer risk education and decision-making support for patients and providers alike.
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