Cancer and the LGBTQ+ community

From delayed diagnoses to missing choices on medical forms to simply not being seen, heard, acknowledged or offered much-needed preventive screening — cancer while queer can be frustrating, heartbreaking and at times, much harder than necessary. (The word “queer” has become a sort of umbrella term for non-heterosexual individuals and identities including lesbian, gay, bisexual, queer/questioning, Two-Spirit, intersex, asexual and more.)

“People have been turned away from care, made to feel not welcome and been discriminated against — either overtly or through microaggressions,” said Matty Triplette, MD, MPH, a health services researcher and physician who serves as medical director of the Lung Cancer Early Detection and Prevention Clinic at Fred Hutchinson Cancer Center. “This may have been more common in the past, but we’ve repeatedly heard about experiences with bias from LGBTQ+ patients with cancer.”

More discrimination, less data

Although around 7% of Americans are lesbian, gay or bisexual (and another 5% of adults under 30 are trans or nonbinary), there’s not much research on LGBTQ+ patients with cancer. Australia’s Out with Cancer group recently conducted a large online survey of 430 LGBTQ patients with cancer in Australia and other English-speaking countries. Among their findings, published in Frontiers of Oncology:

• More than 40% reported high or very high distress levels, 3-6 times higher than in non-LGBTQ cancer studies.
• 82% of respondents experienced discrimination in their life in general.
• 33% experienced discrimination during their cancer care.
• Trans and gender diverse people had higher rates of distress and lower quality of life.

These and other findings led the group to call for “inclusive and affirmative cancer care for LGBTQ patients,” a similar response to that of the American Society of Clinical Oncology’s 2017 “Strategies for Reducing Cancer Health Disparities Among Sexual and Gender Minority Populations.”

LGBTQ+ people with cancer aren’t just facing discrimination, distress and delays, however. Other research shows they may also face higher risk of cancer recurrence.

A study in the Journal of Clinical Oncology in 2022 showed sexual and gender minority patients with breast cancer experienced delays to diagnosis and treatment, and also had a higher chance of cancer recurrence — around 31% as compared to 14% for non LGBTQ+ folks.

Discovering what’s at the heart of these health disparities and poor outcomes is crucial, especially as the population ages and the number of cancer patients — of all stripes — continues to rise.

But there’s a dearth of data on LGBTQ+ patients with cancer. The main reason? A lack of self-reported sexual orientation and gender identity, or SOGI (pronounced “So-Gee”) data.

Although mandated by the Affordable Care Act, only a few cancer centers collect this data, so it can’t be systematically incorporated into national cancer registries like the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program. That means researchers can’t determine overall cancer risk and outcomes for these populations.

Sometimes, SOGI data are just not requested: medical forms don’t have the proper checkboxes or care providers don’t ask for it. Other times, it’s not shared by patients because sharing it feels unsafe — and with good reason.

“We have an obligation to treat the patients in front of us with respect and they deserve that,” Triplette said. “It’s not an option to have a judgment about their lives.” 

Diane Mapes is a staff writer at Fred Hutchinson Cancer Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at dmapes@fredhutch.org. Just diagnosed and need information and resources? Visit our Patient Care page.