Article: Transgender peoples' perspectives of being diagnosed with gender-associated cancer
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ARTICLE AT A GLANCE
What is this article about?
This article gives an overview of the experiences of transgender and gender-nonconforming individuals when they are diagnosed with gender-associated cancer (e.g., ovarian or cancer) that does not match their gender identity.
Why is this article important?
Since 2011, the number of U.S. adults who self-identify as transgender has doubled to an estimated 1.4 million. Transgender people identify as a gender that differs from the one assigned to them at birth. Gender minorities also include people who identify as nonconforming (individuals who identify as neither male nor female or who identify as both).
Clinical studies show that cancer disparities exist between transgender patients and cisgender patients (individuals whose gender identity is consistent with that assigned at birth). Compared to cisgender patients, transgender people are diagnosed at later stages, are less likely to receive treatment
As transgender populations continue to grow and seek healthcare services, members of the community need to share their experiences with healthcare systems, including cancer care and survivorship. Likewise, the healthcare community needs to listen to these experiences and stories and to assess and address the unmet needs of this important community. Lending a voice to these experiences can lead to better cancer care for this population—regardless of the cancer type.
The article featured perspectives from transgender people who had received a diagnosis for cancer that is often associated with
A call to change messaging to raise awareness of cancers that are highly associated with gender
Don Dizon, M.D., an oncologist and director of the pelvic malignancies program at Brown University Lifespan Cancer Institute, says that messaging around awareness of cancers that are often gender-associated should put more focus on cancer, not gender.
"Everything out there about ovarian cancer is about women with ovarian cancer; it's very female-centric. But why can't we just say, 'If you were born with ovaries, you can get ovarian cancer?'" Dr. Dizon told ABC News.
Since 2003, Dr. Dizon has been working to spread awareness that some men can get cervical and ovarian cancer, and some women can get cancer. According to Dizon, awareness of gender-associated cancer and who it impacts has improved.
Enacting healthcare policies to reduce discrimination against transgender people
Research by the nonprofit National LGBTQ Task Force shows that nearly 1 in 5 transgender people reports being denied medical care because of their gender identity. This can cause fear in a transgender person, which in turn may prevent them from seeking cancer-related services, such as screening.
This was the case with Jen, a transgender person who identifies as nonconforming and prefers the pronouns "he/him" or "they/them." Jen was diagnosed with cervical cancer. Jen admitted that he would have been screened three years before diagnosis if it were not for the overwhelming difficulty of searching for a doctor who could understand him. Transgender patients report significantly lower rates of cancer screening compared to cisgender patients.
Danielle Weitzer, D.O., a psychiatrist at Rowan University School of Osteopathic Medicine, says that clinics can take specific steps to make their transgender patients feel welcome. These steps include developing anti-discrimination policies and posting them on their public website and establishing specific services for transgender care.
Dr. Weitzer, who is a transgender person, said that these simple steps “will give potential patients the comfort that a particular clinic has experience and expertise when dealing with the transgender population.”
A multiple disciplinary and transgender-affirming team is important for the cancer care of transgender patients
A good medical team can make all the difference for transgender patients who are recently diagnosed with cancer, according to Jen.
Jen proclaimed that the care he received at Moffit Cancer Center in Tampa was a much smoother process than he had anticipated. He was set up with a multidisciplinary medical team that included oncologists, radiation oncologists and surgical oncologists, as well as an endocrinologist to help navigate
Jen attributed Moffit’s service to the gradual shift toward acceptance of transgender patients within the medical community. Jen added that being a transgender person was not the focus of his cancer care; it was more about his overall well-being.
More data is needed about cancer and related treatment outcomes in transgender people
Data about cancer rates and survivorship experienced by transgender people is limited. According to Ulrike Boehmer, Ph.D., at Boston University School of Public Health, transgender people might navigate their diagnosis differently than a cisgender person. Boehmer added that they might experience discrimination or need help coping with a cancer diagnosis that is typically associated with a gender that doesn't match their identity. This could lead to different experiences of survivorship between transgender and cisgender patients. (Note that while gender can be considered on a spectrum, the study did not report the experiences of non-binary individuals.)
Research by Dr. Boehmer showed that:
- Gender nonconforming cancer survivors had greater physical inactivity, heavy episodic alcohol use, and depression compared with cisgender survivors.
- Transgender male cancer survivors were more likely to report poor physical health and greater medical comorbidities, compared with cisgender men and women.
- Transgender female cancer survivors were significantly more likely to have diabetes compared with cisgender men and women and were more likely to have cardiovascular disease compared with cisgender women.
Dr. Boehmer’s study concluded that health services that target depression in gender-nonconforming survivors may improve survival and should address the complex comorbidities of transgender people.
Dr. Boehmer told ABC News that to improve health outcomes for transgender patients, health professionals should be "listening very closely to patients, understanding what their patients are telling them about their life, who they are and what they bring to this medical encounter."
If you are a transgender or gender-nonconforming person, it is important to find doctors that are knowledgeable, sensitive to your needs and who can provide unbiased care. It is also important to share your full medical history with your healthcare team to make sure that they provide optimal care. Unique concerns for your treatment as a transgender person with a diagnosis for gender-associated cancer (e.g., ovarian, cancer, etc.) may conflict with your gender identity. Receiving gender-affirming medical care could affect cancer risk, treatment and survivorship.
As you share your medical history with your doctor, it’s important to provide all information about your familial history of cancer and whether you have an inherited mutation that increases your risk for cancer.
If you are a transgender individual who is seeking cancer care (e.g., cancer screening or cancer treatment, etc.), it’s important to know that some clinics provide services that are transgender affirming.
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Boehmer U, Gereige J, Winter M, et al. Transgender individuals' cancer survivorship: Results of a cross-sectional study. Cancer. 2020 Jun 15;126(12):2829-2836. Published ahead of print March 5, 2020.
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.
- What’s the process for getting cancer screening?
- Which local clinics for cancer screening or treatment are more welcoming and understanding of transgender individuals?
- What healthcare professionals will be involved in my cancer care?
- Will cancer treatment adversely interact with the gender-affirming therapy that I’m currently using?
- Will cancer treatment affect any future gender-affirming care in my future?
- What is my risk of cancer?
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 [email protected].
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