Q&A: Learning About the Cancer Care Challenges LGBTQ+ People Face
, by Edward Winstead
LGBTQ+ people with cancer can face unexpected questions from health care providers and health insurance companies during their care.
Sexual and gender minority (SGM) people who are being treated for cancer may experience certain challenges. In this Q&A, Gwendolyn Quinn, Ph.D., a health psychologist at New York University Perlmutter Cancer Center and part of the center’s LGBTQ+ Cancer Care and Research Program, describes some of those challenges and ways to address them.
This Q&A has an accompanying story on efforts to expand research on sexual and gender minority groups and cancer.
You conducted one of the first surveys asking oncologists about their knowledge, attitudes, and practice behaviors towards sexual and gender minority individuals. What did you learn?
The oncologists we surveyed had limited knowledge about the health needs of sexual and gender minority people. Some of those surveyed expressed the idea, “I’m a good doctor, and I treat all my patients the same. I don’t need to know this information to treat them well.” But we know that information about a person’s sexual orientation and gender identity can be helpful during cancer care. Our survey also found a lack of comfort in treating transgender individuals, and the reason for this was a lack of training.
Are health care providers today trained in how to care for SGM patients?
People who went to medical school more than a decade ago got very little, if any, training about the LGBTQ+ community in general and, more specifically, transgender and nonbinary people. The good news is that most of the oncologists we surveyed expressed interest in learning more about the unique health needs of LGBTQ+ patients. We are planning a follow-up survey to see how things have changed in the 5 years since our earlier survey.
What are some challenges SGM people might experience during cancer care?
There are many nuances we have not yet worked out for SGM people receiving cancer care. Consequently, these individuals can face unexpected questions from health care providers and health insurance companies during their care.
For example, we’ve seen issues related to how transgender people identify and how their insurance companies have their sex listed. Let’s say a transgender man has changed how they identify on documents such as their driver’s license and health insurance. If doctors put in an order for the person to have a hysterectomy, that’s going to look like an error to the insurance company because, based on their documentation, the person is a man and wouldn’t have a uterus.
Are there other examples?
For people who identify as a different sex from the one they were assigned at birth, having routine blood work in the hospital can lead to questions. Consider, for example, someone who was assigned male at birth and now identifies as a woman. The person’s wrist bracelet in the hospital correctly says “female.” But when their blood work is done, the lab might come back saying there’s an error because the patient has Y chromosomes, which are present in males.
How do you try to help SGM people who may experience these issues?
We cannot always prevent unexpected questions and situations. But if we know a person’s SGM status, we might be able to help the person anticipate some of these challenges. We’ve found that patients who share their SGM status with us have appreciated knowing what to expect. They feel listened to.
Do people with cancer typically share their SGM status with health care providers?
Not always. Some patients will say, “I have pancreatic cancer. Why does information about my sexual orientation and gender identity matter? It isn’t related to my cancer care.” We have been trying to promote the idea that this information can be helpful throughout cancer care and beyond.
How might knowing a person’s SGM status help them after cancer treatment?
Gwendolyn Quinn, Ph.D., LGBTQ+ Cancer Care and Research Program NYU Perlmutter Cancer Center
If a cisgender gay man who has been treated for prostate cancer is seeking a support group, he might not feel comfortable in a support group of heterosexual men talking about their sexual experiences and sexual dysfunctions. If we know his status, we can try to help him find resources that are tailored to his needs. It is important that we provide these resources.
What other challenges do SGM people with cancer face?
Another important area for SGM people with cancer involves planning. Many SGM people are closest to their chosen families rather than their biological families. If an SGM person has a partner but they are not legally married, we may need to help them understand what might happen. For example, if they become incapacitated because of the cancer and are not legally married, the person’s biological family may be able to come in and make decisions about their care. We can certainly help people plan and provide guidance. And to be able to help, we need to know a person’s SGM status.
Do you have any final thoughts on this topic?
The population of SGM people is growing. Talking about how best to care for these individuals when they develop cancer is just as important as talking about advances such as new treatments for the disease.
[This conversation has been edited for clarity and length.]