Study: LGBTQ patients recommend improvements for their cancer care
|At a glance||Questions for your doctor|
This study is about:
the experiences of lesbian, gay, bisexual, transgender and queer (LGBTQ) cancer patients.
Why is this study important?
Lesbian, gay, bisexual, transgender and queer (LGBTQ) cancer patients have unique experiences and needs compared to their peers who are heterosexual and cisgendered (those whose sex assigned at birth matches their gender identity). For example, sexual minority women are more likely to delay health care, are less likely to have a usual place of care, and are more likely to exhibit higher risk behaviors associated with increased breast cancer risk such as smoking, obesity, heavy drinking. However, the experiences of LGBTQ cancer patients in the context of cancer care are not well understood. This study looked at suggestions from LGBTQ cancer patients for improving their cancer care.
Researchers looked at the words and stories of 273 LGBTQ cancer patients for underlying themes. Five themes emerged.
LGBTQ cancer patients reported that they:
- were affected by their health care providers’ LGBTQ-specific knowledge and skills, assumptions about sexual orientation and gender identity, and mistreatment.
A white cisgender lesbian wrote:
"I had been sick for a year prior to diagnosis but my primary care doctor kept trying to get me to take anxiety medication and treating my shortness of breath as panic attacks instead of a result of the large tumor in my chest which would later be found. I feel a lot of that had to do with pre-conceptions about gay people."
- decide how or if to tell their healthcare providers about their sexual identity based on how safe they feel in the clinic.
A Latina cisgender lesbian wrote:
"My partner did not come to the hospital because the only good hospital around was a Catholic hospital and I didn’t want my treatment compromised by them finding out about my ‘sinfu lifelstyle.’ An anti-gay surgeon could easily ‘accidentally’ miss one of the many small lesions of the cancer. Being discovered as a lesbian in a Catholic hospital can be lethal when having cancer."
- had different clinical experiences based on their multiple identities (e.g., older and lesbian).
One woman wrote:
"As an alone, aging senior, I am also dealing with the fear of rejection by being ‘out’ even though I was very ‘out’ when younger and in a partnership."
- received more effective care when members of their support group were included.
A white cisgender lesbian wrote:
"I needed to talk to other gay women with cancer. I tried a support group for women with breast cancer. All the women were straight and THEY gave me a hard time for not doing reconstruction."
- were often self-advocates who underwent significant changes as a result of their cancer diagnosis and treatment.
A cisgender gay man wrote:
"If I had not felt that both me and my partner were fully supported by the medical team I would have immediately gone elsewhere."
Based on their findings, the authors of this study issued guidelines for cancer care providers (see Conclusions below).
What do the experts say?
The Institute of Medicine and The Joint Commission have recommended asking sexual orientation and gender identity questions in clinical settings and including such data in a patient’s Electronic Health Record.
What does this mean for me?
If you are a member of the LGBTQ community, you should know that most health care providers have limited knowledge of the unique LGBTQ health and cancer needs. However, as a recent study reported, many health care providers have a high interest in learning more about the unique healthcare needs of this community.
This study was limited by the lack of diversity among the patients: most respondents were white, cisgender gays and lesbians. More research is needed on the experiences in the cancer care setting of bisexual and transgender people as well as LGBTQ people of color. Finally, because participants were recruited from LGBTQ-specific sources, the study sample likely excluded people who are not open about their sexual and/or gender identities.
Based on the findings of this study, guidelines for cancer care providers were suggested. These include providing access to LGBTQ-specific training on cultural competency, responsiveness and humility; asking about and using patients’ names and pronouns; including support people of the patient’s choosing; and providing support resources that are relevant to the sexual orientation and identities of patients, among others.
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Kamen CS, Alpert A, Margolies L, Griggs JJ, Darbes L, Smith-Stoner M, Lytle M, Poteat T, Scout N and Norton SA. "Treat us with dignity": a qualitative study of the experiences and recommendations of lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients with cancer." Support Care Cancer. 2019. (7):2525-2532.
Schabath MB, Blackburn CA, Sutter ME, PhD,1 Kanetsky PA, Vadaparampil ST, Simmons VN, Sanchez JA, Sutton SK and Quinn GP. "National Survey of Oncologists at National Cancer Institute–Designated Comprehensive Cancer Centers: Attitudes, Knowledge, and Practice Behaviors About LGBTQ Patients With Cancer." Clin Oncol. 2019. 37(7): 547–558.
This article is relevant for:
LGBTQ cancer patients and their healthcare providers.
This article is also relevant for:
People with a genetic mutation linked to cancer risk
People newly diagnosed with cancer
People with a family history of cancer
Be part of XRAY:
The University of California Center for Excellence in Transgender Health published the second edition of Guidelines for the Primary and Gender-Affirming Care of Transgender and Gender Nonbinary People, which include the following recommendations for cancer screening and treatment:
- For transgender women, breast cancer screening beginning 5-10 years after the use of feminizing hormones.
- For transgender men who have not had mastectomy or who had breast reduction rather than mastectomy, routine breast cancer screening based on personal and/or family history.
- Genetic counseling and/or testing if there is a known mutation in a or other gene that increases cancer risk or if the patient has a personal or family history of cancer that meets national guidelines for genetic counseling and testing.
- Screening for other cancers (e.g., cervical, endometrial, , etc.) should be based on an individual’s personal and/or family history of cancer.
- Do you have experience working with LBTGQ patients?
- What support networks are available to individuals who have my orientation or concerns?
The following studies are enrolling people from the LGBTQ+ community.
- PRIDE Study: The PRIDE Study is the first long-term national health study of LGBTQ+ people. The goal is to improve the long-term health and wellness of LGBTQ+ people.
Exploring Gender Diverse Experiences of Risk: A Johns Hopkins genetic counseling student is conducting an interview study exploring gender-diverse folks’ experiences of care, with the aim of better educating providers about LGBTQ+ needs and concerns. Interviews are held on the Zoom platform with individuals who qualify. If you are interested in participating, contact Sarah Roth at firstname.lastname@example.org.
Visit our Featured Research Page and Research Search and Enroll Tool to find additional studies enrolling people with, or at high risk for cancer. Note: Most of these trials are geared towards cisgender people.
The following organizations offer peer support services for people from the LGBTQ+ community.
- FORCE holds virtual support meetings organized by and for members of the LGBTQ+ community. Check our National Meetings page for the next scheduled meeting.
- The National LGBT Cancer Network offers cancer support group meetings.
The following resources can help people from the LGBTQ+ community find compassionate care.
- National LGBTQ Cancer Network Database of LGBTQ+-Welcoming Cancer Screening Providers
- National LGBTQ Cancer Network Database of LGBTQ+-Welcoming Cancer Treatment Providers