For many transgender and gender diverse (TGD) individuals, gender-affirming mastectomy—often referred to as "top surgery"—is a life-changing, medically necessary procedure that aligns the body with one’s internal identity. However, a troubling reality persists in the oncology and surgical landscapes: these patients are frequently navigating the surgical process without a clear understanding of their lifelong breast and chest cancer risks.
New research from the Boston University Chobanian & Avedisian School of Medicine has brought this systemic failure into sharp focus, revealing that the medical infrastructure is currently ill-equipped to provide TGD patients with the genetic counseling and preventative screenings necessary for informed decision-making.
Main Facts: The Invisible Risk in Gender-Affirming Care
The study, published in the journal Breast Cancer Research and Treatment, highlights a significant chasm in the continuum of care. Currently, the standard of care for patients undergoing gender-affirming mastectomy does not consistently include a comprehensive assessment of breast or chest cancer risk.
This means that individuals may undergo surgery without knowing if they possess a genetic predisposition—such as a BRCA mutation—that might necessitate a different surgical approach, such as a prophylactic mastectomy rather than a standard gender-affirming procedure. Because TGD individuals often face significant healthcare disparities, they are statistically more likely to be diagnosed with cancer at later, more dangerous stages than their cisgender counterparts.
The researchers identified four "pillars of failure" currently preventing effective care:
- Lack of Institutional Accountability: Responsibility currently rests on the shoulders of individual providers rather than being embedded in hospital policy.
- Absence of Harmonized Guidelines: There is no national consensus or evidence-based standard on how to assess, screen, or monitor risk for TGD patients.
- Fragmented Care Pathways: The disconnect between primary care, genetic counseling, and surgical teams leaves patients falling through the cracks.
- Lack of Integration: Genetic counseling is rarely a standard component of multidisciplinary gender-affirming care teams.
Chronology: A Two-Part Investigative Journey
The findings released this year are the culmination of a multi-phase investigation aimed at understanding the "why" behind these disparities.
Phase I: The Patient Perspective
In a companion study published in JCO Oncology Practice, researchers interviewed 16 transgender patients. The qualitative data revealed a consistent theme: patients felt a profound lack of information. Many participants expressed that they were never asked about their family history of cancer, nor were they informed about how the removal of breast tissue would affect their future cancer surveillance or what screening might look like in the post-operative chest.
Phase II: The Provider Perspective
Following the patient interviews, the team conducted a second study involving 20 healthcare professionals, including primary care physicians, oncologists, plastic surgeons, and genetic counselors. This study sought to identify the operational barriers that prevent these providers from integrating cancer risk assessment into their practice. The consensus among these professionals was that while the desire to provide high-quality care exists, the systemic infrastructure to support that care is fundamentally absent.
Supporting Data: Why Current Systems Are Failing
The research underscores that the problem is not a lack of empathy among clinicians, but a lack of structural design. Many of the 20 interviewed professionals reported that they were unsure of how to initiate conversations regarding cancer risk.
"Many healthcare professionals caring for transgender patients want to help, but there is currently no standardized conversation about breast/chest cancer risk," explains Kim Zayhowski, MS, CGC, the study’s corresponding author and an assistant professor of medical sciences & education at Boston University.
The data indicates that the "standard" model of oncology care—which relies on gendered assumptions about anatomy and risk—is failing to adapt to the needs of the TGD community. Without standardized pathways, the decision to discuss genetic risk is left to the individual discretion of the surgeon or the primary care doctor, leading to inconsistent, and often inadequate, patient outcomes.
Official Responses: Moving Beyond Individual Commitment
The researchers argue that waiting for individual providers to "get it right" is a failed strategy. Instead, they are calling for a top-down overhaul of how healthcare institutions approach gender-affirming care.
"Every person—transgender or cisgender—deserves clear information about their cancer risk and access to prevention," says Zayhowski. "We’re calling on healthcare institutions and organizations 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."
The call to action is clear:
- Institutional Infrastructure: Hospitals must mandate that cancer risk assessment becomes a standard part of the pre-surgical intake process for gender-affirming mastectomy.
- Multidisciplinary Teams: Genetic counselors should be integrated into gender-affirming care teams, ensuring that familial risk is assessed before any surgical intervention.
- Standardized Pathways: Hospitals need to implement clear, evidence-based protocols that guide providers through the nuances of risk assessment for trans and nonbinary patients.
Implications: The CHESTcare Solution
Recognizing that structural change takes time, the research team is not merely identifying the problem—they are actively building a solution. They are currently developing CHESTcare (Cancer & Hereditary Risk Education & Support for Transgender and nonbinary individuals).
What is CHESTcare?
CHESTcare is an online, interactive toolkit designed to fill the information void. It serves two distinct purposes:
- For Patients: It provides accessible, medically accurate, and inclusive education regarding hereditary risk and what cancer screening looks like in the context of gender-affirming surgery. It empowers patients to ask the right questions during their pre-operative consultations.
- For Providers: It offers a roadmap for clinicians, providing them with the necessary language and evidence-based protocols to conduct effective, respectful, and thorough cancer risk assessments with their TGD patients.
The implications of this tool are significant. By standardizing the information provided to both sides of the examination table, the team hopes to mitigate the anxiety and uncertainty that currently plague the surgical planning process for many TGD individuals.
A Call for Systemic Reform
The research conducted at the Boston University Chobanian & Avedisian School of Medicine serves as a wake-up call for the medical community. As gender-affirming care becomes more accessible, the oncology community must ensure that the quality of preventative care keeps pace with the quality of surgical care.
The disparities highlighted in this study are not inevitable; they are the result of an outdated, gender-binary-focused healthcare model. By implementing the recommendations set forth by the researchers—specifically the integration of genetic counseling and the creation of standardized institutional pathways—the medical field can ensure that the "top surgery" journey is one of safety, clarity, and true informed consent.
As the findings gain traction in the medical community, the hope is that institutions will prioritize the investment in infrastructure that Zayhowski and her colleagues are advocating for. The ultimate goal is a future where the transition to one’s authentic self does not come at the cost of one’s long-term health, and where every patient, regardless of their gender identity, is equipped with the knowledge necessary to protect their future.
Further Resources and Next Steps
The research was supported by the National Society of Genetic Counselors Cancer Special Interest Group. For patients and providers looking to engage with the developing toolkit, more information can be found at chestcare.org.
The full findings are available in the journal Breast Cancer Research and Treatment (DOI: 10.1007/s10549-026-08038-9). As this field continues to evolve, ongoing dialogue between oncologists, plastic surgeons, and the TGD community will remain the most critical tool for closing the equity gap.
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