Affirming Hereditary Cancer Care for LGBTQIA+ Patients: Clinical Takeaways

Chandrika Kurpad MS, LCGC - CGA-IGC Communications Committee Member

Synthesized from the CGA-IGC 2026 podcast series, Episode 4 featuring Kimberly Zayhowski, a certified genetic counselor and assistant program director at Boston University, and Dr. Iris Romero, a professor of OB/GYN at the University of Chicago who specializes in hereditary cancer prevention and LGBTQ+ health, in conversation with host Ying Lu, a GYN medical oncologist who leads the Inherited GYN Cancer Program at Memorial Sloan Kettering Cancer Center. Listen to the podcast HERE

Our recent conversations on the 2026 CGA-IGC podcast series offer providers practical guidance on hereditary cancer care for LGBTQIA+ patients. Across both, genetic counselor Kimberly Zayhowski and Dr. Iris Romero return to the same core idea: center the individual patient, and base care on their actual anatomy, surgical history, and hormone use rather than on assumptions.

What affirming care actually means

Zayhowski frames inclusive care as beginning with the recognition that LGBTQIA+ patients are the experts on their own bodies and lives. Asking how a patient would like you to talk about their body, and what matters to them, shifts the power dynamic of the encounter. Clinically, that means not inferring family structure, sexuality, or anatomy from how someone presents, separating sex assigned at birth from gender, and asking about partnerships and family without assuming heterosexuality. She also urges providers to understand how gender-affirming care intersects with cancer care and to be ready to discuss the limits of collective knowledge.

Romero arrives at the same place: affirming care is, fundamentally, the care that serves any patient well- centering their values and identity and following their lead. The discipline it requires is slowing down. Clinics move fast, and it is in that speed that we default to the wrong name, the wrong pronoun, or an unwarranted assumption about a patient's family.

Barriers and the data gap

Zayhowski describes structural barriers that are intensifying: LGBTQIA+ patients are less likely to have health insurance, which is tied to employment and marriage; clinic spaces built on women's-health assumptions (pink "women's health" signage renders a transmasculine patient who reasonably needs breast screening "unintelligible"); and a legal and political landscape actively hostile to transgender people, with states criminalizing gender-affirming care and proposals to restrict reproductive technologies for same-sex couples. Provider knowledge gaps collide with institutional pressure to avoid these conversations. In this climate, she argues, inclusive care also functions as a buffer between patients and a hostile system.

Romero names the biggest global gap as the invisibility of this population in the data—and without data, it is hard to practice good medicine for the patients in front of us. The field has already made intentional efforts to improve under-representative racial data in hereditary cancer genetics; the same approach applies here, beginning with a non-binary gender option on data-collection forms and acknowledging the various family structures that make up families today. She adds that some patients still encounter providers who are not ready, or who fundamentally object, to caring for them.

Genetic counseling considerations: anatomy, surgery, and hormones

The shared clinical principle is precision medicine: counsel from the patient's actual tissue exposure and surgical history, and from the hormone therapy they are on, rather than from gender.

• Testosterone gives a transmasculine patient a different hormonal exposure, which is clinically relevant.

• Top surgery removes less tissue than a risk-reducing mastectomy, so a patient may still need cancer screening—and may not know it. ACOG and NCCN recommend considering genetic testing before top surgery so results can inform how much tissue is removed.

• After a vaginal plasty (the creation of a vagina), prostate cancer risk generally remains; because that vagina is sometimes created from colon tissue, a patient with a hereditary colon cancer or polyp condition may need it screened with that in mind.

The operational move is to fold a few questions into every assessment and then connect each answer to risk. Exposures change across life stages: a patient tested at 25 may come out at 35 or later pursue surgery. Zayhowski also notes that patients are increasingly making medical decisions under duress—rushing to freeze eggs or access surgery out of fear that access will be restricted.

Gender-affirming care and cancer prevention

Romero offers a clear hierarchy: center gender-affirming care first, then prevention and screening. Most of the time these are not mutually exclusive, and in genuine conflict she leans toward gender affirmation, because compromising it is so damaging to a patient's overall well-being. Her example is a transgender man with Lynch syndrome. The reflexive "safest route" is to discourage testosterone over ovarian cancer risk, but that would be deeply harmful and is usually unnecessary. The honest move when one doesn't know is "I don't know today, but I'll find out and close the loop," and then to look—the data will not be perfect, but extrapolating from cisgender populations, gender-affirming hormones are most often fine for a patient with a hereditary predisposition.

This also frees surgical timing from its usual framing around childbearing and menopause. Many transgender men—especially younger ones—want the uterus, tubes, and ovaries removed as early as possible as part of their gender-affirming journey and because those organs cause dysphoria, and many do not intend to be genetically related parents (though not all, so don't assume). That surgery, often already underway through gender-affirming care, also eliminates uterine and ovarian cancer risk, and similar reasoning applies to breast cancer risk. Prevention and gender-affirming care frequently advance the same goal and can justify intervention in a patient's twenties.

Language at the bedside

Ask how a patient wants their body described and use that language consistently—many transmasculine patients prefer "chest" to "breast." Name cancers by organ rather than gender ("prostate cancer risk," not "men's cancers"); Zayhowski notes this is both more inclusive and more precise. Romero models pausing before certain words and handing the patient control: Are there words you'd like me to avoid? Is "ovaries" all right? She is candid that she will sometimes accidentally use such a word, but the visible effort earns substantial goodwill—and she stresses that transgender patients are as committed to cancer prevention as anyone. They are less likely to engage when a provider feels unsafe, aggressive, or antagonistic, not because of their gender identity.

Documentation and privacy

Zayhowski urges strategic documentation. Charting that a patient is transgender exposes that fact to the whole care team—something the patient may not have intended—and such records are increasingly subpoenaed and misused. A genetic result tied to sex or gender could be weaponized around custody, employment, or safety. Document what is clinically necessary while protecting privacy, have a candid conversation with patients about what they want visible in their chart, and engage privacy officers. She documents cancer risk by organ rather than as male or female cancers, which she notes is also more specific.

Psychosocial context

Medical distrust is deepening, particularly among patients who are also of color, disabled, or otherwise marginalized. Minority stress—the chronic stress of navigating discrimination, legal threats, uncertainty, and coming-out fatigue—raises behaviors such as smoking and drinking that affect cancer risk. Family dynamics can be fraught, including rejection from their biological family, reliance on chosen family, and difficult feelings about disclosure. Patients do not owe us their trust; it must be earned.

Assumptions and biases to avoid

Zayhowski groups the most damaging biases into four categories: family structure (not everyone has a mother and a father), reproductive intent and access (not everyone wants or can access biological children, and options are restricted for many same-sex couples), partnership (say "partner," and take same-sex partnerships seriously in decision-making), and gendered framing of cancer (treating breast cancer as a "women's" issue excludes transmasculine and non-binary patients, who already screen less).

Start tomorrow

Revise intake forms so gender identity is captured separately from sex assigned at birth, with pronouns as an optional field. Ask—rather than assume—about partnerships, hormones, surgeries, and reproductive goals, and let patients narrate their own story. Replace gendered phrasing with individualized framing ("based on your history"). Partner with privacy officers on responsible documentation. And when institutions pressure providers to de-prioritize this care, push back; Zayhowski names this as institutional discrimination that compromises patient safety.

The road ahead

Romero points to consensus guidelines for screening and prevention in transgender men and women who carry high-penetrance genes, and to breaking the catch-22 in which the absence of data forestalls guidelines and exclusion from research forestalls data. As the host notes, the genetics community is used to making recommendations for rare syndromes with very little data. Recent progress on the pedigree shows what is possible. Zayhowski's closing frame is the one to carry into clinic: LGBTQIA+ healthcare is not controversial—it is simply care, and building systems that work for everyone is better medicine.

Drawn from the CGA-IGC 2026 podcast series conversations hosted by Dr. Ying Liu with Kimberly Zayhowski and Dr. Iris Romero.

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If you enjoyed this podcast, you may also like our CGA-IGC Research Collaboration series- or others from the CGA-IGC Podcast Series (Seasons 3, 4, 5, 6, 7 & 8) presented by the CGA-IGC Education Committee. Or, explore our Expert Approach to Hereditary Gastrointestinal Cancers podcast series (Seasons 1 and 2). We're also on Spotify!

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