Receiving a cancer diagnosis can be terrifying for anyone, but particularly in LGBTQ communities, the risk of receiving inadequate cancer care — or not even being diagnosed in the first place — is tremendous. LGBTQ people are at a higher risk than their peers to have cancer, according to LGBTHealthLink, but are less likely to receive affirming, inclusive treatment — including access to LGBTQ-affirmative preventative health care, mental health care, and trans-affirming doctors throughout the care process. Even oncologists across the country acknowledge that as a whole, there is simply not enough knowledge about the needs of LGBTQ cancer patients where it needs to be.
To illustrate these problems, the National LGBT Cancer Network conducted a study in 2017 that found that LGBTQ people who disclosed their gender identity and/or sexual orientation to their cancer care providers usually did so under risky circumstances, and received no LGBTQ-specific follow-up support. Of those surveyed, 58% of LGBTQ cancer patients who came out to their providers did so as a way to correct a cis-heteronormative assumption on the part of a care provider.
Taking the risk to correct an assumption about your gender or sexuality is intense emotional labor, and these efforts are particularly taxing when you are already worried about your cancer diagnosis. Further, the 2017 study found that 43% of LGBTQ cancer patients were not offered any group support referrals, and the 34% of people that were linked to support groups were not offered any connection to LGBTQ specific support. This specific support is important because, for example, in a support group for spouses of prostate cancer survivors, “A gay man may be the only man in a room full of women, which could impact his willingness to share or even attend at all,” Dr. Chasity Burrows Walters, director of Patient and Caregiver Engagement at Memorial Sloan Kettering Cancer Center, tells Bustle. Dr. Burrows Walters says that the emotional impacts of this lack of support can be extra burdensome for LGBTQ patients and families. “The support provided by ‘families of choice’ for LGBTQ patients offers great benefit to the community,” she tells Bustle. “However… when a woman is joined by her [same-gender] partner, a healthcare provider may not offer that partner the same support resources they would [if that partner were a man]."
The emotional burden that these kinds of microaggressions place on LGBTQ cancer patients mirrors/is a symptom of the overall dearth of knowledge providers have about LGBTQ cancer care. A 2017 study published in The Journal of Clinical Medicine revealed that less than half of participating oncologists were able to correctly answer knowledge-based questions about LGBTQ patients. The study also revealed an apparent assumption that knowing a patient’s gender or sexuality did not matter when it came to treatment: only 65.8% of oncologists participating said that knowing a patient’s gender was important, and only 39.6% said that knowing a patient’s sexuality is important. However, over 70% of the oncologists surveyed admitted that they did not know enough about the unique health needs of LGBTQ cancer patients. That lack of knowledge makes it clear that treating all patients “equally” (by not needing to know their gender and sexuality) results in assumptions that all patients need the same resources and care, when that isn't the case for non-cisgender or heterosexual patients.
This is particularly important for transgender patients. A 2015 report by the National Center for Transgender Equality revealed that less than 40% of transgender individuals are out to their health care providers. Lacking the safety to be out to health care providers — particularly the array of specialists and unfamiliar nurses and staff that cancer care introduces you to — transgender patients risk experiencing dysphoria during medical treatments (which, especially for breast, cervical, and prostate cancer, are framed socially and medically as being gendered). This dysphoria and the fear of mistreatment from coming out — and oncologists’ general, admitted and proven lack of knowledge of how to address transgender cancer patients in an affirming way — can prevent many transgender people from seeking the care they need.
It's not just about making medical settings inclusive — it's about changing health outcomes for LGBTQ patients.
At Memorial Sloan Kettering, Dr. Burrows Walters says that trans patients are assigned rooms based on their actual gender, rather than the gender they were assigned at birth. Doctors and staff also “discuss ways of ensuring a person can continue to express their gender throughout the cancer continuum.” Dr. Burrows Walters tells Bustle that dysphoria and misgendering can be huge parts of cancer journeys when people need to stop binding their chests or pause their hormone replacement therapy (HRT) while they undergo treatment for health reasons.
Dr. Burrows Walters tells Bustle that she hopes to see a rise in data collection aimed at improving LGBTQ cancer care. Data collection and knowledge building “is so important throughout the cancer continuum, from screening guidelines (like how often a transgender man should be screened for cervical cancer) to survivorship (like whether it’s safe to continue taking hormones [during cancer treatment and after]),” she says. “Based on the available research, we know that the best way to collect data on a person’s sexual orientation and gender identity is by including those questions on forms, so if you haven’t already, you will probably start to see them on forms in your doctor’s office or in hospitals. Your honest answers to those questions are the best chance we have at addressing cancer disparities in LGBTQ populations.”
This is why Waxoh! — a queer-affirming online magazine produced by social discovery and dating website DatingPositives — is partnering with Bi.org, The Phluid Project and Hairrari to launch a new social campaign/petition dubbed #WeNeedAButton. According to a press release sent to Bustle, the goal of #WeNeedAButton is to call on "all major patient-matching sites (i.e. Zocdoc, Healthcare Bluebook, Better Doctor, etc.) to include a button that filters for queer-friendly healthcare providers across all disciplines." These kinds of filters that can help LGBTQ patients find affirmative health care that will serve as preventative measures against high LGBTQ cancer rates. Because ultimately, it's not just about making medical settings inclusive — it's about changing health outcomes for LGBTQ patients.
Correction: This article was updated to include Dr. Burrows Walters' full name on July 31, 2019.