NEW ORLEANS – Sept. 18, 2024 – Transgender and gender-diverse individuals who are considering masculinizing top surgery may not realize they could still be at risk for breast/chest cancer after surgery. A proposed first-of-its-kind toolkit would address that gap and help them and their providers make informed healthcare decisions about genetic testing, surgery and screening, according to a new project being previewed at the National Society of Genetic Counselors (NSGC) 43rd Annual Conference.
The project is supported by NSGC’s prestigious Jane Engelberg Memorial Fellowship (JEMF). The proposed toolkit will be designed to facilitate discussions about breast/cancer risk, appropriate screening, and genetic risk assessment and surgical options. It will be piloted and refined based on feedback from transgender and gender-diverse individuals and healthcare providers within the two years of the fellowship. Once developed, it will be distributed to those who work with transgender and gender-diverse patients, including primary care providers, oncologists, plastic surgeons and gender care clinics. It will also be available to patients.
“Transgender and gender-diverse individuals who were assigned female at birth and have had top surgery may still have some residual breast tissue, which could pose a risk for breast/chest cancer,” said Kimberly Zayhowski, MS, CGC, winner of the JEMF and leader of the project, who is an assistant professor and genetic counselor at Boston University Chobanian & Avedisian School of Medicine. “Many of them – and often, their providers – may not be aware of this risk, yet limited tailored guidance on screening or genetic counseling exists for this population. Our proposed toolkit aims to close this gap in both awareness and care by providing essential information and resources.”
She noted the toolkit will likely include easy-to-understand information about breast/chest cancer risk, how gender-affirming hormones or surgeries might impact that risk, information about different surgical options and recommendations for personalized screening plans. It may also contain visual guides, Q&A sections, checklists for patient-provider discussions and links to support services for genetic counseling and cancer screening.
For example, genetic testing may help inform transgender and gender-diverse individuals’ discussions with their surgeons about how much breast tissue to remove. If there is a high chance of breast/chest cancer based on family history or genetic testing results, the individual might consider having bilateral risk-reducing mastectomy.
“Informative and affirming healthcare should be the standard for all and the toolkit will be unique in its focus on inclusivity and cultural sensitivity,” said Zayhowski. “Feedback from both the transgender and gender-diverse community and healthcare providers through surveys, interviews and focus groups will help ensure the toolkit meets their real-world needs and concerns.”
Additionally, the following students have been given JEMF awards for their research.
2024 Student Research Award Winners:
- Marie Droual: “Exploring patient perspectives regarding implementation of genetic counseling services within a student-run free clinic”
- Chiara Dart: “Global Insights: Unveiling the Professional Landscape of Genetic Counselors Beyond the United States and Canada”
- Cristina Fodor: “Empowering the Empowerers”
- Tessa Holtkamp: “Understanding the impact of academic advising on community college student's exposure to genetic counseling: a qualitative study”
- Candace Kim: “Exploring and comparing the experiences and perspectives of genetic counselors of different racial and ethnic identities transitioning into the workforce”
- Courtney Cook, MSc, CGC: “Parents' perspectives, experiences, and need for support when communicating with their children about the psychiatric manifestations of 22q11.2 deletion syndrome (22q11DS)”
2024 Student Manuscript Award Winner:
- Valerie Chu, MSc, CGC: “A qualitative study exploring LGBTQ genetic counseling students’ relationships with peers and faculty in graduate school'”
Note to editors: Media interested in viewing study abstracts, interviewing authors and/or attending sessions at the NSGC Annual Conference can contact NSGC’s PR team at 630-344-2009 or NSGCPR@pcipr.com.
About the National Society of Genetic Counselors
NSGC is the leading voice, authority and advocate for the genetic counseling profession. Membership represents more than 5,000 masters-level health professionals, who are committed to ensuring that the public has access to genetic counseling and genetic testing. For more information, visit www.nsgc.org.