By Liz Margolies, LCSW
Getting a diagnosis of cancer is frightening for everyone. But for many lesbian, gay, bisexual, and transgender (LGBT) patients, the immediate concerns about treatment options and survival are compounded by an additional set of worries:
- "Should I come out to my healthcare providers?"
- "Will I be safe if I do?"
- "Will my chosen family be welcome?"
- "Will I be able to find the information I need to take care of my relationship, my sexuality, my fertility and my family?"
LGBT cancer patients and survivors are underserved and that is partly as a result of being underreported. No cancer registries collect information about gender identity or sexual orientation, leaving LGBT cancer survivors buried in the data and often invisible to healthcare providers. Treatment facilities and social service organizations may also be unaware of the true number of LGBT people they serve because their intake forms do not invite disclosure (coming out as lesbian, gay, bisexual, transgender), and fear of discrimination keeps many patients in the closet. As a result, the healthcare system often fails to recognize LGBT patients and isn't trained to meet their needs.
The American Cancer Society estimated in January 2014 that there were approximately 14.5 million Americans living with a history of cancer. Approximately 4% of Americans identify as LGBT, and LGBT people are known to have increased cancer risks and decreased screening rates. Considering all these factors, the National LGBT Cancer Network, estimates that there are more than 1 million LGBT cancer survivors in the country today. You might even know one or more of them.
Increased risks for LGBT people
Multiple small studies highlight dramatically increased cancer risks in LGBT people. Lesbians, for example, have the most risk factors of any group for breast cancer, including higher rates of smoking, never having children, obesity, and alcohol use. Gay men have incredibly high rates of HPV infection (65% in HIV- gay men and 95% in HIV+ gay men) that, when coupled with high tobacco use, increases their risks for anal and other cancers. While very little is known about the cancer risks for transgender people, hormone use, which is often part of the transition process, may increase the risk for certain cancers. Unfortunately, in this population, increased risks are often coupled with decreased screening, which means that cancers are often not caught early, when treatment is more likely to be successful.
'Unique facets of survivorship'
My organization, the National LGBT Cancer Network, conducted an online survey of more than 300 LGBT survivors, and what they told us about their experiences highlights several unique facets of LGBT survivorship. Of course, all people are different and individual experiences are determined by many factors, including cancer type, age, geographic location, race, socioeconomic status, and personal history of discrimination. When interacting with LGBT survivors, I listen carefully to see if any of the issues in the list below may be sources of increased stress, and then respond with focused support.
Fear of discrimination coupled with a history of negative experiences make LGBT patients wary of the healthcare system. Once diagnosed with cancer, they must engage with the system for their very survival, even as these interactions bring additional worries about acceptance and pressure to conform to gender expectations and stereotypes. Below are the 6 major themes LGBT people told us about in detail:
1. A history of stigma leads to LGBT wariness of the healthcare system.Previous negative experiences, as well as low rates of health insurance, have kept many LGBT people from using the healthcare system. Once diagnosed with cancer, they must enter the healthcare system, and this can compound their stress level. As one survivor told us:
"Although my doctor knew all about me, each encounter with new people-with blood draws, ultrasound, breast x-ray, etc.-had the basic anxiety of the procedure and layered on to that, the possibility of homophobia and having to watch out for myself."
2. The local healthcare system determines the experience for LGBT patients. Most people are treated in medical centers near their homes, and their cancer experience is a result of the staff they meet there and the social policies of that city and state. For example, LGBT discrimination is banned in less than half the states in the US. Sometimes, the only treatment option is at a hospital with religious affiliations, some of which have a history of discriminating against LGBT patients. One cancer patient 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 'sinful lifestyle.'"
3. Coming out depends on perceived safety. The best care can only be received when patients feel safe bringing their whole selves into treatment. While some brave patients do come out, it is the responsibility of the healthcare or social service provider to invite this disclosure through intake forms that include such information and in conversation. In our study, survivors weighed the wish to come out against their fears of subsequent substandard care.
"As an alone, aging senior, I am also dealing with fear of rejection by being 'out' even though I was very 'out' when younger and in a partnership. There is a big part of the 'cancer' experience that never gets shared with the caregivers or service providers when you are not comfortable letting them know who you really are!"
4. LGBT support systems may be different. Like most cancer survivors, LGBT people create informal teams of people for support through the diagnosis and treatment process. These people may accompany patients to appointments, make hospital visits and/or help with food and chores at home. The most important source of support for an LGBT patient may be someone who is a "legal stranger" because most U.S. states still don't allow same sex marriage. Many LGBT people have been rejected by their family of origin due to their sexual orientation and/or gender identity and lean on friends and partners for support. As one woman told us:
"It is important to know where it is safe to bring a partner, because my family hates me and even my mother told me right before the surgery that she hoped I would die in surgery and that she wished I had never been born."
5. LGBT people are alienated by pressure to adhere to gender expectations. Cancer care often exposes LGBT patients to gender expectations that can be off-putting for some LGBT patients. For example, many lesbians have had to repeatedly defend the decision to not have breast reconstruction, and gay men have felt uncomfortably pressured to adopt a masculine stoicism, like "battling" their cancer. As one lesbian put it:
"Being a lesbian facing having your breasts cut off, it would be good if they did not assume you were concerned about how 'men' would see you in the future!"
6. LGBT survivors need culturally competent supportive services. Healthcare providers are often unaware of cancer's unique impact on LGBT sexuality, fertility, relationships, and family, leaving these survivors with too many unanswered questions. Support groups for patients and caregivers are not always places they can safely voice their concerns and receive support, for all the reasons mentioned above. A gay man expressed the value of his support group:
"Having a gay male support group was the best thing that happened to me. I feel very lucky to be able to discuss both feelings and sensations without any inhibition at all in the company of other gay men who also had prostate cancer."
How you can help
Now that you know how a cancer diagnosis can be even scarier for an LGBT person, what can you do? A few personal changes would go a very long way while we wait for widespread legal and policy shifts that ban discrimination.
First, remember that LGBT people may need reassurance in order to come out to you and/or their healthcare providers. Avoid saying things like, "Cancer doesn't discriminate," because, while the disease may not, the healthcare system often does. Since many LGBT survivors do not have families to lean on, check if they need extra support. If they feel isolated, help them connect with other LGBT survivors, either locally or through online support groups, like the one offered by the National LGBT Cancer Network.
To truly change the cancer journey for lesbian, gay, bisexual, and transgender persons, we cannot simply wait for the law to catch up. We must extend a welcome to this population, collect the relevant data, offer LGBT support groups, and train healthcare providers to better meet the needs of LGBT patients/clients.
Learn how to be an ally and extend a hand to your LGBT family, friends, and neighbors so they can be their true selves.
Margolies is executive director of the LGBT Cancer Network.