When it comes to prostate cancer, 'gay men are erased,' patients say
Once laser-focused on HIV/AIDS, the gay community is now addressing one of the perils of getting older.
Perry Brass, right, with his husband, Hugh Young. Courtesy of Perry Brass
By Dan Avery
Prostate cancer is the most prevalent invasive cancer among men, affecting nearly one in eight at some point in their lives, according to the Centers for Disease Control. But the unique challenges facing gay and bisexual men with prostate cancer have largely gone unaddressed.
Men who have sex with men (MSM) are less likely to get regular prostate cancer screenings, and those who are diagnosed are less likely to have familial and social support, according to research cited by the National Institutes of Health. And if their health care provider is not culturally competent, gay and bisexual men are much less likely to understand how treatment will impact their quality of life.
"Those in large metropolitan areas may have the option of searching for an LGBT-welcoming provider, but most Americans don’t have a choice about who treats them."
“Many LGBT people enter their cancer treatment wary,” Liz Margolies of the National LGBT Cancer Network told NBC News. “Those in large metropolitan areas may have the option of searching for an LGBT-welcoming provider, but most Americans don’t have a choice about who treats them.”
As a result, Margolies added, many lesbian, gay, bisexual and transgender patients go back in the closet when they begin cancer treatment. Even if they don’t, providers often don’t ask about patients' sexual behavior or identity, forcing them to bring the subject up themselves — sometimes again and again with each new specialist.
Writer Perry Brass was diagnosed with prostate cancer in March 2016. Three months later he had a radical prostatectomy, removing his entire prostate. Brass, then 68, was lucky: He lives in New York City, home to top-notch doctors and a medical community more informed about LGBTQ health.
“I’ve been a gay activist — and been out — so long that I took it for granted I could talk openly to my doctors,” he told NBC News. But even he was unprepared for the side effects.
"Your sex drive can take a nosedive," Brass said, adding that prostate cancer can also lead to erectile dysfunction. "You’re experiencing ED, but that doesn’t mean you’re not experiencing sexual attraction," he said.
About 20 percent of patients treated with radiation experience irradiated bowels, which can make receptive anal sex painful or even impossible. Treatment can also affect penis size, ability to ejaculate, experience of orgasm and urinary continence during sex. Brass’ said his sexual function was relatively good, but instead he struggled with incontinence for weeks — using as many as nine “pads” a day and staying within yards of a bathroom at all times.
If you’re gay and you go to a urologist who hasn’t dealt with gay men, they’ll tell you, 'Bring your wife with you.'"
He joined a prostate cancer support group specifically for gay and bisexual men at Mount Sinai Hospital in Manhattan, one of several organized by the national advocacy organization MaleCare.
Being with other queer men “allowed us to be very open about our feelings — and our sexuality — and to be empathetic with each other,” Brass said. “Too often gay men are erased in these [support] groups. They don’t want to hear other men be vulnerable, and they don’t want to hear about gay sex.”
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That’s true in the doctor’s office, too, Brass added.
“If you’re gay and you go to a urologist who hasn’t dealt with gay men, they’ll tell you, ‘Bring your wife with you,’" he said. "If you bring another man, they don’t know what to do. They can’t even breathe the words ‘anal sex.’ Talking to a man about it is just impossible.”
That discomfort can spread to gay patients. “To go into a urologist office, you walk in with all this shame and inhibition,” Brass lamented.
It’s impossible to know how many gay men have been diagnosed prostate cancer, because questions about sexuality are rarely included in research studies. “The medical community say, ‘We don’t want to ask older heterosexual men questions that might upset them,’" Simon Rosser, an LGBTQ health specialist and co-author of "Gay and Bisexual Men Living With Prostate Cancer," told NBC News.
A professor at the University of Minnesota School of Public Health, Rosser has received a $3 million grant from the National Cancer Institute to put together the first comprehensive rehabilitation program specifically for gay and bisexual men with prostate cancer. But he’s not just a researcher — he’s a survivor himself, diagnosed last year at age 59. And he’s keenly aware of how little information is available for men like him.
“When my husband was diagnosed and had a radical prostatectomy, we reached out for help," Rosser said. "We were amazed to see how little was out there. I realized there were no studies, no research. It was a neglected area.”
But it wasn’t institutionalized homophobia, Rosser stressed. “Our efforts were focused on battling HIV, keeping young men alive. Frankly the older guys were secondary.”
When it comes to cancer, urologists and oncologists — even wives — are laser-focused on survival, according to Rosser. But he said when it comes to male patients, "studies show again and again that quality of life is equally important." And, he added, "a big part of quality of life is urinary continence and sexual function.”
Doctors may also make a number of assumptions about patients, including about their family support system, their sexual orientation and their sexual interests.
“Your doctor might tell you you’ll have an erection strong enough for intercourse, but anal penetration requires 33 percent more rigidity,” Rosser said. He’s heard men say their doctors “neutered” them. Others have said they’d rather be dead. In all, 15 percent of all men who’ve had a radical prostatectomy exhibit some kind of “treatment regret.” For gay men, so long ignored by medicine, Rosser believes those rates are much higher.
“[A heterosexual man] with a postmenopausal wife who doesn’t want sex anyway might just accept having a low libido,” he explained. “But if your partner is another man, and his drive isn’t diminished, it can be a real problem.”
Rosser said the silence and shame surrounding the topic allows ugly myths to flourish — like that gay sex somehow “caused” their cancer. “Guys can feel guilty,” Rosser said. “Or, their partners may think on some level, they can ‘catch’ it.”
He had some of those thoughts himself: “I’m a cyclist — did being in the saddle too much cause it? Did enjoying receptive anal sex?”
Without good data, researchers can’t get to the truth, Rosser stressed.
The first step is raising awareness: Launching in January, Rosser’s groundbreaking program is bringing together a multidisciplinary team of top urologists, medical doctors, clinicians and sex therapists working with 450 candidates flagged by MaleCare.
“It’s an opportunity for all of us to do better,” he said. “Gay men have a lot to offer the subject of prostate cancer. And we have studies that show outcomes are different for gay men: We have worse mental health, we have greater urinary problems, but our sexual outcomes are reliably better.”
"Knowing that a third of my friends died from AIDS, I felt like I owed it to them to do everything I could to stay alive."
This spring, after his prostate specific antigens (PSA) started rising, Perry Brass underwent radiation treatment. The testosterone-killing hormones he had to take led to a kind of “male menopause.” But he’s in remission, something he credits to both his medical team and his husband, Hugh.
The survival rate for early-stage prostate cancer is 99 percent. Getting the disease, ironically, is something of a luxury for a gay men of Brass’ age: Too many had their lives cut short by the AIDS epidemic long before they’d typically be diagnosed (the average age for a prostate cancer diagnosis is 66).
After the advent of lifesaving antiretroviral drugs in the mid-1990s, though, gay men are finally reaching their golden years.
“I am grateful that I’m alive when so many of my friends aren’t,” Brass said. “It actually got me through the diagnosis. Knowing that a third of my friends died from AIDS, I felt like I owed it to them to do everything I could to stay alive.”
It stole a generation, but the AIDS epidemic also taught gay men how to fight disease, how to ask questions and how to demand better treatment.
“I think there’s a lot we can teach in fighting prostate cancer,” Rosser said. “About expanding your idea of sex and sexuality, about maintaining a fit lifestyle as you get older. And, I think, as gay men, we bring a deep feeling of compassion, empathy and humor. We can laugh at it sometimes — and I do.”