When Gay Men Get Prostate Cancer

First, Allen Rose had to face reality: His doctor had just diagnosed him with prostate cancer at age 45. “I was stunned,” recalls Rose, now a 60-year-old paralegal living in Rockville, Maryland. “It was really the first experience of my life where I had to take in my own mortality.”

Next, Rose had to decide what to do about it. His urologist gave him four treatment options and two weeks to decide on one. Like many men in his position, Rose turned to the internet for information. But because he included “gay” in his search terms, he didn’t find it.

“I think I found maybe one article, and it wasn’t real helpful,” says Rose, whose urologist didn’t know he is gay.

[See: What Only Your Partner Knows About Your Health.]

Though the internet landscape has changed since his diagnosis in 2003, Rose’s experience is still representative of the lack of awareness and research surrounding how prostate cancer may affect gay men differently than straight men. Much of the funding for researching diseases that may affect gay men has been funneled toward HIV; and some of the gay men who may have gotten prostate cancer – which is more common with age – died of AIDS and therefore are theoretically missing from the data, says Simon Rosser, a professor and director of the HIV/STI Intervention and Prevention Studies at the University of Minnesota School of Public Health.

Since more gay and bisexual men are hitting high-risk ages for prostate cancer these days, he says, “it’s going to become a bigger issue for gay and bisexual men in the next decade, and no doc on the planet can practice evidence-based medicine” since there is no strong evidence base.

Not that there’s been an easy way to study the population; surveillance data in cancer research isn’t typically conducted by sexual orientation, adds Rosser, who’s recruiting participants for the first treatment study on gay and bisexual men with prostate cancer. Plus, there’s a common perception that, when it comes to cancer, sexual orientation doesn’t matter.

“The first thing scientists and physicians will say is, ‘Prostate cancer is prostate cancer. It doesn’t matter if you’re gay or straight,” says Michael Hoyt, an associate psychology professor at Hunter College in New York whose research based on a small focus group of gay prostate cancer survivors will soon be published. “And actually, that’s not entirely true.”

Other Battles Some Gay Men With Prostate Cancer Face

While gay men seem to have about the same rates of prostate cancer as men in general – making it the most diagnosed cancer among all men, according to the Centers for Disease Control and Prevention – a review conducted by Rosser and colleagues suggests that gay survivors have poorer sexual functioning and lower quality of life.

Researchers’ interviews with men hint at numerous reasons why. For one, some gay men in Hoyt’s focus group reported stress around disclosing their sexual orientation to their health providers, while others worked with clinicians who didn’t know and didn’t ask.

“There’s a tendency for physicians to think that everyone is heterosexual [and] because some men have had negative experiences coming out, they will not come out,” says Daniela Wittmann, a sex therapist and clinical assistant professor in the University of Michigan Department of Urology who serves as the sexual recovery lead for TrueNTH, a Movember Project-funded initiative to help men and their loved ones navigate prostate cancer.

But for many gay men, working with a provider who knows and honors their sexual orientation is important in part because more often than straight men, “sex, at some point has been a critical part of their personal story,” Hoyt says.

Take one participant in his study, for example, who felt that his providers’ failure to acknowledge his sexuality was a blow to who he was as a person – and a patient. “Having to fight battles and then having a sexual self that you’ve fought for” should be acknowledged, he told the research team.

From a practical, medical standpoint, too, understanding a patient’s sexuality is important because while all prostate cancer survivors have some sexual side effects from treatment, frankly, gay sex is different from straight sex – and treatment options should be discussed accordingly. “The nitty gritty of ‘What is going to happen to my body?’ is not really talked about with these guys,” Hoyt says.

For example, erectile dysfunction is a common side effect of both radiation and surgery to treat prostrate cancer – and can affect gay men’s sex lives differently since “they need firmer erections for penetration” than they’d need for vaginal intercourse, Wittmann says. Meanwhile, the anus, too, can be fragile or more irritated after treatments. “If the man is in a relationship where he is ‘the top,’ he would be concerned about the erections,” whereas “the bottom” would be more concerned about the anus, Wittmann says. “It’s not like when men are in this relationship that they can just switch roles. The issue then becomes how to manage that.”

Surgery to remove the prostate, too, takes away men’s ability to ejaculate and can cause some men to leak urine when they orgasm. “Being informed helps to manage expectations,” Wittmann says.

For Rose, the decision came down to surgery or a form of radiation therapy called seeding. “The biggest concern I had about the surgery [is] that I would never ejaculate again – that’s just a fact,” he says. But since, at the time, the surgery had a stronger evidence base for long-term outcomes and he felt less comfortable with the idea of radiation, he decided it was the right option for him.

Fortunately, he still feels that way – and his husband, whom he met a few years later, “has never expressed any discomfort with that fact” either, Rose says. “We enjoy that part of our life together.”

[See: What Only Your Partner Knows About Your Health.]

Other men haven’t fared so well. In a preliminary study led by Rosser, one participant who produced urine during orgasm said, “I don’t take my clothes off because I’m embarrassed and humiliated. I have what they call arousal impotence. That’s part of the reason my husband and I no longer have sex.”

While there’s more to surviving prostate cancer than managing its effects on your sex life, experts say concerns about sexual functioning shouldn’t be brushed aside or downplayed – no matter your sexual orientation. “You have to think about sexual health as being a part of overall health; it’s an important aspect of connecting to one’s own body and to be connected to another person,” Wittmann says. “It’s a part of vitality and participating meaningfully in life.”

Beyond the Bedroom

Outside of the bedroom, gay men’s diagnoses can also mean isolation from the gay community, researchers have found. “When someone gets HIV, we rally, we have organizations, we have groups – even our young people in the community are interested in helping HIV-positive people,” Hoyt remembers one study participant telling him. “Nobody is bringing me a cake for prostate cancer.”

But support from the gay community is critical for men with prostate cancer, especially considering some of them have been rejected by their own family members or geographic communities for their sexual orientation, Hoyt and others have reported. “Reach out to parts of the community that are there to support you as a cancer survivor,” he advises. For example, some cities have support groups for gay cancer survivors and organizations like the National LGBT Cancer Network can help.

[See: 10 Lessons From Empowered Patients.]

For Rose, who joined a mainly gay running club a few years after his surgery, having people in his life who listened to and supported him throughout the journey has been key to his well-being. “It’s not the end of the world,” he would tell men – gay or straight – who have been newly diagnosed with prostate cancer. “You just kind of move on.”