LGBTQ+ Cancer Survivors: Lessons Learned and the Road Ahead
After a previous encounter with a doctor who was not open to treating gay patients, Daniel West knew he needed to find a health care provider he could trust when he was diagnosed with non-small cell lung cancer (NSCLC) in December 2022.
“It’s very important for anyone in my community to be comfortable with their physician,” West said. “My doctor is not gay, but he’s understanding of John’s and my relationship. He understands that we’re a team … that we are making this decision as a family.”
Unfortunately, 37% of those in the lesbian, gay, bisexual, transgender, queer, plus (LGBTQ+) community have had similar experiences to West in which they felt discriminated against in a health care setting, according to the AACR Cancer Disparities Progress Report 2024.
The report also cites several other studies that show the disparities LGBTQ+ individuals face across the cancer care continuum, including:
- Transgender individuals are 76% more likely to be diagnosed with advanced-stage lung cancer compared to cisgender individuals.
- Transgender women are 60% less likely to develop prostate cancer compared to cisgender men but are twice as likely to die from it.
- It took an average of 64 days from the appearance of symptoms for sexual and gender minority (SGM) individuals to be diagnosed with breast cancer compared to 34 days for cisgender heterosexuals.
- Men who have sex with men are 20 times more likely (if they are HIV-negative) and 40 times more likely (if they are HIV-positive) to have anal cancer than heterosexual men.
The reasons for these disparities have been associated with, but are not limited to, the high prevalence of certain risk factors like smoking and alcohol use in these populations, suboptimal screening, higher rates of HPV and HIV infections, and a lack of understanding of what LGBTQ+ patients need.
“LGBTQ+ inequities are grounded in a variety of models and theories but at the end of the day, anti-LGBTQ+ stigma and discrimination kill,” said Austin R. Waters, MSPH, a doctoral candidate in health policy and management at the University of North Carolina (UNC) Gillings School of Global Public Health in Chapel Hill, whose research involves better understanding access and quality of care for LGBTQ+ patients and caregivers. “While interventions like LGBTQ+-specific prehabilitation or LGBTQ+ patient navigators may minimize some inequities, ultimately societal and policy changes such as non-discrimination laws, affordable housing, and affordable health care are needed to completely address such disparities.”
As LGBTQ+ individuals wait for such large-scale changes, what can they learn from LGBTQ+ cancer survivors about what is in their control? Where are improvements most needed? And what do studies into these disparities reveal about what else LGBTQ+ cancer survivors must be aware of? Read on to find out.
The Wider Benefits of Trust
West’s quest to find the right doctor for him illustrates two of the key lessons he learned: Be proactive about your health and maintain open lines of communication with your health care providers.
“It’s okay to get a second opinion if you don’t feel like you’re getting the care that you need,” West said. “I had so many questions. It is important to find someone that can be an advocate and help you navigate the steps that you need to take for treatment.”
Finding a trustworthy guide can also help LGBTQ+ individuals overcome another disparity cited in the AACR Cancer Disparities Progress Report 2024: a higher susceptibility to psychosocial conditions. This is, in part, due to the mental toll of navigating non-inclusive health care environments or dealing with untrustworthy health care providers. But when SGM cancer survivors were treated at a hospital with a more inclusive environment, they were six times more likely to be satisfied with their care—and as a result felt they had improved physical and mental health.
Find a Community to Lean On
Darlene Pruess has spent time as a carpenter, artist, prop maker, and sommelier, among other things. In April 2020, at 62 years old, she was starting to plan her retirement when she was diagnosed with multiple myeloma.
It was a shock. Even at 62, most of her jobs kept her physically active—not to mention her affinity for swimming, biking, and walking—but she was unprepared for managing everything that comes with a cancer diagnosis by herself. From the doctor appointments to the treatment regimen to the bone marrow transplant to dealing with financial stress and everything in between.
“It is like a full-time job, especially being single,” Pruess said. “However, I did have a lot of friends both from my local LGBTQ community as well as outside the community. It’s hard to ask for help but essential when you’re going through this, and they made it very easy.”
While the cancer diagnosis had put her retirement plans on hold, she is grateful that health insurance covered most of her treatments and that she was able to receive some additional funds for her care. Now she is enjoying retired life and has been in and out of remission.
“I feel great,” she said. “I may be in remission again, as we speak.”
Better Screening Protocols Needed
After being diagnosed with stomach cancer at the age of 34 and breast cancer three and a half years later, Irasema Partida Chavez understands the importance of detecting cancer early.
“If I had the opportunity to speak to legislators and Congress, it would be about having better screening protocols in the stomach cancer space, because we don’t have any,” Chavez said. “We’re being diagnosed in our 30s and 40s.”
Chavez is currently doing well following a total gastrectomy and a double mastectomy and there has been no evidence of breast cancer for three years and of stomach cancer for about eight years. She likes to share her story and for people to know that living without a stomach is possible. “It is hard, but you can live a good, healthy, and very fulfilling life,” she said.
Throughout her journey, her wife was a pillar by her side.
“I had an amazing team of doctors, who 9 times out of 10 reached out to my wife first,” Chavez explained. “I never experienced any kind of discrimination for my orientation.”
While Chavez was fortunate not to face any discrimination, several studies have found disparities in adherence to cancer screenings among SGM individuals. For instance, transgender individuals have lower rates of screening than cisgender individuals for all cancer types, according to the AACR Cancer Disparities Progress Report 2024. In the case of cervical cancer specifically, nearly 25% of transgender individuals have never been screened compared to 7% of cisgender individuals. One study in the report indicated that the best way to ensure SGM individuals maintain routine screening: better communication with health care providers.
LGBTQ+ Cancer Survivors Face Higher Risks for Chronic Diseases
Another thing cancer survivors should know, studies have found that they have a higher propensity for chronic conditions—such as diabetes, kidney disease, liver disease, COPD, and heart disease—compared to those who have never been diagnosed with cancer. The prevalence of chronic conditions is even higher in lesbian, gay, and bisexual (LBG) cancer survivors than in non-LGB survivors.
Waters and his colleagues wanted to break things down further to differentiate between cisgender and transgender identities among LGBTQ+ survivors, which few previous national samples had done. They examined data from the Behavioral Risk Factor Surveillance System (BRFSS), a phone survey system managed by the Centers for Disease Control and Prevention, which included 40,990 cancer survivors from 2020-2022. Of the 1,715 who identified as LGBTQ+, 638 were lesbian or gay individuals, 551 were bisexuals, and 458 identified as another non-heterosexual sexual orientation, such as queer, pansexual, or asexual. Of the 114 transgender or gender non-conforming (TGNC) cancer survivors, 38 identified as transgender men, 43 as transgender women, and 33 as gender non-conforming.
The study, which was published in Cancer Epidemiology, Biomarkers & Prevention, found that when adjusted for age, race and ethnicity, smoking status, and education and household income, TGNC cancer survivors were more likely than non-TGNC cancer survivors to report having heart disease, asthma, COPD, myocardial infarction, kidney disease, stroke, diabetes, hearing disabilities, vision disabilities, cognitive limitations, difficulty walking, difficulty dressing, and difficulty running errands at increased odds ranging from 2.34 to 6.03. Cisgender lesbian, gay, and bisexual survivors, however, were more likely to report depressive disorder compared to TGNC survivors.
“Transgender and gender non-conforming individuals are some of the most marginalized people in the LGBTQ+ community and are known to experience barriers to health care discrimination, more exclusion, more violence, and other factors than LGB individuals,” said Waters, who is also a predoctoral fellow at the UNC Lineberger Comprehensive Cancer Center. “Our study highlights the challenges TGNC cancer survivors face and the need for TGNC individuals as well as all other LGBTQ+ cancer survivors to be prioritized in care across the continuum.”
Waters said that all researchers, administrators, and clinicians have a part to play in understanding how to provide better care to LGBTQ+ cancer survivors and then implementing them in their work. Studies that directly involve LGBTQ+ cancer survivors can also help, since population-level data on this demographic is lacking due to the fact that information on sexual orientations and gender identities has not been routinely collected and documented.
“I would be very comfortable and happy to be part of that data,” said Pruess, who also wants to see policy makers continue to support cancer research while making sure that it gets doled out equally to both the queer community and beyond.
