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Breast Cancer and the LGBT Community

Breast Cancer and the LGBT Community
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To mark National Breast Cancer Awareness Month and find out more about cancer and LGBT people, Fifty is the New Fifty spoke with Liz Margolies, L.C.S.W., founder and executive director of the National LGBT Cancer Network, the first national program addressing the needs of all LGBT people with cancer and those at risk. Margolies is also a psychotherapist in private practice in New York City, specializing in trauma, loss, health disparities, and sexuality.

Tell us a bit about yourself and how you came to found the LGBT Cancer Network.

I founded the National LGBT Cancer Network in 2007. I lost three very close lesbian friends to ovarian cancer and watched multiple others go through successful treatment for breast cancer. This struck me as way above the odds for a person of my age. The more I learned about the disproportionate cancer burden carried by the LGBT community, the more fascinated and outraged I became. There was strikingly little attention to the problem of cancer in our community and even today, the LGBT health agenda is dominated by a focus on HIV. We have seen some attention paid to lesbians and breast cancer, but our community experiences multiple increased cancer risks and decreased screening rates, resulting in a higher incidence of many different types of cancer. One of the biggest health problems for long-term HIV survivors is cancer!

What different types of care and support do LGBT folks need around cancer diagnosis, treatment, education, etc.?

We need to focus on prevention first. Most of our increased risks can be traced to behaviors that result from the stress and stigma of discrimination. LGBT people smoke and drink at much higher rates than the national average and lesbians are more likely to be overweight. They are also less likely to have a biological child before the age of 30, which would offer some protection. Taken together, these form the densest cluster of risk factors for breast cancer.

But we also need to focus on screening. A populations like ours with an increased risk needs to be hyper vigilant about screening, but instead, we find the opposite. Our rates are lower. As a group, LGBT people are less likely to have health insurance and many have experienced discrimination in healthcare settings. We tend to avoid those places where we can’t be our authentic selves.

In fact, a recent study found that 1 out of 5 transgender people was turned away by a healthcare provider, simply because they were transgender. Transgender men who have not had “top surgery” are still at risk for breast cancer, but less likely to take care of a body part that doesn’t match their gender identity. The brave trans guy who goes to get a mammogram should NOT be turned away, but welcomed!

I encourage LGBT people to go in “packs” to the doctor. Everyone is nervous when they get screened for cancer and LGBT people are often more wary. They face forms that don’t allow them to express their authentic selves and relationships and they rarely see themselves reflected in the art or reading materials in the waiting room. We need extra support. Health care needs to be come a team sport, where we can comfort and encourage each other.

Once diagnosed with cancer, LGBT people face additional challenges. While everyone likes to say that “Cancer doesn’t discriminate”, the healthcare system often does. When the illness is life threatening, like cancer can be, people are less likely to take the risk of coming out and get second-rate treatment or outright rejection. We have seen LGBT people pretend to be single, never bringing their partner to doctor appointments or the hospital. Our support systems do not mirror the general public. We are more likely to rely on friends and ex-lovers for support than our biological families, as many LGBT people have been rejected by their parents and siblings. Even well intentioned healthcare providers usually have no idea how cancer treatment will impact LGBT sexuality, relationships and fertility.

What is cultural competence training? Tell us about what it entails, what audience its aimed at, and why it’s needed.

Most of the healthcare providers I have met have their heart in the right place. They have little sense of how their practice and language can be off-putting to LGBT people. They tell me, “I treat everyone the same”. The problem with this is that we don’t all need the same thing and it erases the meaningful differences between people. What we offer in cultural competence training is an introduction to the language and culture and health needs of LGBT people. We make it a safe place for people to ask all the questions they fear are stupid. For example, many people have now heard the term “cisgender” and wonder what it means. Some fear it is derogatory. In cultural competence workshops, we have an opportunity to define it. (Cisgender people are people who identify with the sex they were assigned at birth. When I was born, for example, the doctor exclaimed “It’s a girl” and, yes, I identify as female. Transgender people, by contrast, do not feel that the sex assigned to them at birth accurately defines their gender identity. My partner was assigned female at birth but came to feel that he was actually male. He is a transgender man.)

We know that men get breast cancer, too, and not only cis-gendered males but also transgendered men, too.

Transgender men do get breast cancer and, as you can imagine, the supportive services offered to breast cancer survivors do not welcome them or understand them. My organization has recently started an online support group for transgender cancer survivors.

Pink ribbons are the longstanding symbol for breast cancer awareness and many mainstream cancer awareness organizations have made pink synonymous with breast cancer. We know you have a strong about this – will you tell us about it?

I hate the “pinking” of breast cancer, as it represents a commercialization of a hideous disease (buy yoghurt with a pink ribbon on it?!), an infantalization of breast cancer survivors (they are often given pink teddy bears) and, of particular concern to many LGBT survivors, the “pinking” is associated with a very narrow and “girly” gender expression. Many lesbian breast cancer survivors are not comfortable with the imposition of the cute pinkness onto their experience. The pinking often comes with a pressure for breast reconstruction, “look beautiful/feel beautiful” programs and other well-intentioned offerings that unconsciously perpetuate a single vision of female beauty, one that does not match the lesbian one. And, again, imagine how alienating this must be for transgender men with breast cancer….

What in particular do people (of all genders and gender expressions) who are 50+ need to know about breast cancer?

Breast cancer is not inevitable. It is also not a death sentence. I suggest you take care of that body you have, no matter how you feel about it. Mammograms aren’t any fun at all, but go with your friends, make a day of it. Mammograms and the Movies! Mammograms and Mojitos! Mammograms and Mah Jongg!

 

 

 

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Stephanie Schroeder
Stephanie Schroeder is freelance writer and activist based in Brooklyn, NY. Her work has been published The Guardian US, The Brooklyn Paper, Curve, Chelsea Now, Passport, and others. She is the author of the memoir Beautiful Wreck: Sex, Lies & Suicide.