Information for Transgender, Nonbinary, and Gender-Diverse People

Top surgery reduces – but does not eliminate – chest cancer risk. This is because top surgery is designed for gender affirmation, not cancer prevention. Some tissue is intentionally left behind to create a masculine chest shape.

• People with a family history of cancer or a genetic variant may still be at elevated risk after top surgery
• If you have high cancer risk, you may have additional options, including a risk-reducing mastectomy with masculine reconstruction, performed by a surgical oncologist and plastic surgeon working as a team
• The choice of surgery is yours. Providers should give you complete information and support your decision – they do not require cisgender women with high risk to have risk-reducing surgery, and the same principle applies to you

Top surgery (left) leaves tissue behind to make the chest shape. During cancer risk-reducing surgery (right), the surgeon removes almost all tissue between the skin and muscle wall.

The full impact of testosterone on chest cancer risk is not yet fully understood. Here is what we currently know:

• Testosterone may change how chest tissue looks and behaves – and those changes can affect the quality of screening (e.g., mammograms)
• Both androgens (like testosterone) and estrogens can drive breast cancer; testosterone can convert to estrogen-related compounds in the body
• Testosterone may reduce estrogen production over time, but this does not eliminate risk
• Chest cancer still occurs in people on testosterone, including those who have and have not had top surgery
• Testosterone should not be withheld based on theoretical cancer risk. Any decision to pause testosterone in someone with a cancer diagnosis should involve a breast oncology specialist and a patient-centered discussion

We need larger, long-term studies in transgender and nonbinary people to give clearer answers. Tell your provider about your testosterone use and full health history – including family history and any genetic test results.

About 10% of chest cancers have a genetic cause. You may be at increased hereditary risk if you or a blood relative has had:

• Chest cancer before age 50
• Ovarian, pancreatic, prostate, or melanoma cancer at any age
• Multiple cancers in one person, or several cancers on one side of the family
• Bilateral chest cancer
• Chest cancer in a cisgender man

Genes associated with increased chest cancer risk include: BRCA1, BRCA2, PALB2, ATM, BARD1, CDH1, CHEK2, NF1, PTEN, RAD51C, RAD51D, STK11, and TP53, among others.

Even without a family history, genetic testing may be recommended if you:

• Have limited knowledge of your family history (e.g., adoption, estrangement, small family)
• Have Ashkenazi Jewish ancestry
• Simply want to know more about your risk

Important: National guidelines (NCCN, ACOG) recommend genetic testing before top surgery for people with a personal or family history of hereditary cancer – so results can inform how much tissue to remove.

A genetic counselor is a specialist who can:

• Review your personal and family history in detail
• Determine if you meet criteria for genetic testing
• Help you understand your results
• Guide decisions about screening and surgery that align with your values and goals

Ask your primary care provider for a referral, or find a genetic counselor near you:  findageneticcounselor.nsgc.org

If you had genetic testing outside of a medical setting (e.g., direct-to-consumer or ancestry testing), results should be confirmed by a genetics specialist to ensure you receive the right care.

Screening finds cancer early, when it’s most treatable. The right type and frequency for you depends on your age, surgery history, family history, and genetic risk.

• Some people may experience dysphoria during screening – talk to your provider about logistics and support options
• Ask about gender-inclusive imaging centers in your area

• Based on my family history, should I see a genetic counselor or get genetic testing?
• Based on my top surgery, how much tissue was left behind – and what does that mean for my screening?
• What chest cancer screenings do I need, and when should I start?
• Are there gender-inclusive imaging centers near me?
• Can you teach me how to do a self-exam on my chest?
• Who will keep me updated as research on testosterone and cancer risk evolves?

Please note: many healthcare providers use the term “breast” – bringing your questions written down can help you advocate for yourself.

Before your appointment:

• Write down a summary of why you’re here and your goals for care.
• Write down your questions ahead of time.
  • For a list of personalized questions to bring to your provider about top surgery and cancer risk, take this short quiz.
• Write down your boundaries, and know it’s okay to set them.
  • You can send a letter to your healthcare provider in advance, letting them know of your preferred name and pronouns, triggers, and what words you prefer to describe your body.
    • For example: “please say ‘chest’ instead of ‘breast’” or “please ask before you touch me and narrate what you are doing.”
  • A healthcare provider may not read the letter before the appointment. Have a physical copy of the letter and restate your boundaries at the beginning of the appointment.
• Ask how other aspects of the appointments can be made more comfortable. For example:
  • Ask for privacy while waiting for appointments in waiting rooms
  • Ask for inclusive educational materials (gender-inclusive or LGBTQIA+ specific).
  • Ask about clothing options, like if you can wear a button-down instead of a hospital gown for a mammogram.
• Bring a trusted person
  • You can bring someone to your appointments to support you. This can be a friend, family member, or a support worker.
  • This person can take notes for you, speak-up for you during the appointment, and debrief with you afterwards.

During the appointment:

• Take notes on important things your provider says
• Write down any questions that come up.
  • You may not be able to ask a question right away, so writing it down will help you remember.
• Determine what’s going to happen next in your care before you leave the appointment:
  • Will you have another appointment?
  • If you had a test done, how would you get the results?
  • If you were recommended to see a genetic counselor, who will make sure that appointment is scheduled?

Know your rights

You have the right to:

• Say no to surgery to reduce cancer risk
• Say no to screening that doesn’t feel right for you
• Receive complete information about all of your options
• Experience respectful, gender-affirming care related to cancer risk

• The Breasties – Community for survivors, previvors, and caregivers impacted by breast and gynecologic cancers
• FORCE (Facing Hereditary Cancer Empowered) – Support for individuals and families facing hereditary cancer
• The Cancer Network – Support for LGBTQIA+ individuals, caregivers, and providers navigating cancer
• CoppaFeel! – Chest self-exam resources including trans and nonbinary guides