LGBTQ+ Voices: Listening to Sexual and Gender Minority People Affected by Cancer

May 3, 2024, by NCI Staff

After surgery for breast cancer 2 years ago, Asiyah Franklin, who identifies as queer, asked her health care team when she could become sexually active again.

“They had given me guidance about returning to activities such as driving after my double mastectomy,” she said. “I wanted to know when I could resume having sex.”

But Franklin, who is a nurse, did not get the medical advice she sought. Instead, she had “an awkward conversation” with a doctor and did not receive an answer to her question.

The exchange was one of several that left Franklin feeling “unheard and unseen while undergoing treatment for cancer,” she said.

Franklin’s experience highlights the challenges that sexual and gender minority (SGM) people with cancer may face. SGM is an umbrella term that includes lesbian, gay, bisexual, transgender, queer, intersex, and asexual individuals, as well as people who are neither heterosexual nor cisgender (LGBTQIA+).

Although research on cancer and SGM people has been limited, this group reports less satisfaction with cancer care and is more likely to have experienced discrimination in health care settings than non-SGM people.

The rates of certain cancers, such as anal, breast, and cervical cancer, may differ between SGM subgroups and non-SGM people, though researchers lack the data to definitively answer this question. Some risk factors for cancer, such as tobacco use and infection with cancer-causing viruses, appear to be more common in SGM subgroups than non-SGM groups.

In addition, transgender and gender-diverse individuals are less likely to be up to date on their recommended cancer screening tests than non-SGM people. The reasons, researchers say, are complex and may include a lack of health care providers trained to care for SGM people.

There is also evidence that SGM people are less likely to seek care for possible symptoms of cancer than non-SGM people, and, as a result, their cancers may be diagnosed at a more advanced stage.

“SGM people experience disparities across all aspects of cancer and cancer care,” said Matthew Schabath, Ph.D., of the Moffitt Cancer Center, who studies health disparities among SGM populations. “But we do not yet understand the true breadth and depth of these disparities.”

The good news, Dr. Schabath continued, is that the number of researchers interested in studying these disparities has been growing.

A national conference on SGM people and cancer

Many of these investigators attended the first national conference dedicated to research on cancer among SGM peopleExit Disclaimer, in October 2023. With nearly 200 attendees, including experienced researchers and young investigators, the gathering marked a milestone for the field.

“The conference was invigorating,” said Ulrike Boehmer, Ph.D., of Boston University School of Public Health, who has studied SGM populations and cancer for several decades.

“Cancer among SGM people is an important and neglected topic,” Dr. Boehmer continued. “But more researchers have embraced the field recently, and they were able to connect and exchange ideas at the conference.”

In addition to scientists, the NCI-sponsored meeting drew health care providers, patient advocates, SGM cancer survivors, and representatives of agencies that fund cancer research. New York University's Perlmutter Cancer Center hosted the event.

The participants presented new research, discussed priorities for future studies, and shared lessons learned about securing research funding. A panel of SGM people affected by cancer added patient perspectives.

Who identifies as a sexual and gender minority person?

Part of the meeting focused on a challenge for the field: the lack of data on SGM people and cancer.

Although national cancer registries collect information on variables such as age, race, and ethnicity, they do not collect data on sexual orientation and gender identity. Cancer clinical trials also do not routinely collect that data.

So, for most of the people with cancer in the United States, “we don’t know who identifies as a sexual and gender minority person,” explained Sarah Jackson, Ph.D., of NCI’s Division of Cancer Epidemiology and Genetics, who studies cancer in transgender and gender-diverse individuals.

The lack of sexual orientation and gender identity data in national cancer registries limits the kinds of studies that are possible, she continued. Researchers cannot, for instance, compare national data on SGM and non-SGM groups to see how they might differ in cancer incidence, survival, or response to treatment.

Without these data, researchers have often relied on health surveys. The OUT National Cancer Survey and the Behavioral Risk Factor Surveillance System, for instance, capture sexual orientation and gender identity data as well as health data. And some large health studies, including NIH’s All of Us study, do as well.

“We need to include the collection of these data in everything we do—every single survey, every cohort study, and every clinical trial,” Dr. Jackson said.

For the last few years, NCI has been supporting studies designed to learn how best to collect sexual orientation and gender identity information. Investigators involved in this work at various cancer centers shared their findings at the conference.

There is also support in the cancer registry community for collecting sexual orientation and gender identity information in the future, according to Kathy Cronin, Ph.D., of NCI’s Surveillance Research Program.

“There is a recognition that this information is important to collect if we are to better understand cancer risks and inequities in outcomes,” Dr. Cronin said.

Read the full blog post on the Cancer Currents: An NCI Cancer Research blog.