Yeah, yeah, yeah, "cancer doesn't discriminate." But the health care system that delivers our treatment often does. It's not always intentional, although it surely sometimes is. If discrimination is defined as the practice of unfairly treating a person or group of people because of their membership in that particular group, then many LGBT cancer survivors have absolutely experienced discrimination in their cancer care. Some of us have had our partners excluded from our hospital or treatment rooms, had our pronouns butchered, and/or been sent home without appropriate information about how cancer will affect our sex lives, fertility and relationships.
We need support, and we need each other.
Cancer may not discriminate, but the stigma and stress of living as sexual and gender minorities often lead to behaviors that increase our cancer risks. As a group, LGBT people have dramatically higher rates of tobacco and alcohol use, increasing our risks for multiple types of cancer. On top of that, lower health insurance rates and the fear of discrimination keep us from getting regular cancer screenings. None of the national cancer registries collects information about gender identity or sexual orientation, but if you compound increased risks with lower screening rates, I am sadly confident that LGBT people have an increased incidence of cancer.
Once diagnosed with cancer, LGBT people are thrust into the medical system, whether they are ready for it or not. Many have avoided doctors for years. This fear is often justified; one out of five transgender people report having been denied health care simply because of their gender identity. So a cancer diagnosis can be especially scary and isolating for LGBT people. After worrying about survival, we wonder about our safety and comfort during treatment. Should I come out to my doctor? Will I be safe if I do? Will my chosen family be welcome? Will I be offered the information I need?
We need support, and we need to connect with other LGBT survivors.
Many LGBT survivors do not feel welcome or understood in mainstream support groups, and transgender survivors have been especially excluded. There are very few LGBT cancer support groups across the country, and those of us who live further from major metropolitan areas are very unlikely to find one at all. A study conducted by my organization, the National LGBT Cancer Network, confirmed that tailored support groups were the top request made by LGBT cancer survivors. So we decided to do something about it ourselves.
The National LGBT Cancer Network recently received funding from the New York Department of Health to set up support groups for lesbian, bisexual and transgender breast cancer survivors across the state. We will be offering both an online, real-time, professionally led support group for lesbian and bisexual survivors, and a 24-hour-access forum for trans survivors. Both are completely free of charge.
Online groups offer some unique advantages over face-to-face groups. They allow people to log on from home, a great benefit to cancer survivors who are busy, tired, and/or have family responsibilities that make it difficult to attend an evening group. These groups may be especially valuable for LGBT survivors who live outside major cities and would have more trouble accessing community support. Online groups are also more welcoming for breast cancer survivors with physical, visual, hearing, cognitive and communication disabilities.
Our research indicates some of the topics that survivors will want to address, like coming out to providers, sex after cancer treatment, pressure for gender conformity, body image and relationships. More importantly, we are ready to learn from survivors and keep revising the groups to meet our real needs.
Please help spread the word to LGBT breast cancer survivors in New York. Tell them that they are not alone, and that support is now available. And please tell survivors in other states that we are working to secure funding to create more groups for survivors all across the country.