Paul Gauthier says the most stressful part about his experience with prostate cancer was waiting for his test results.
“When I got the results, it was sort of a relief in a way,” he says. “I knew where I stood.”
It was during a routine physical that Gauthier’s doctor noticed something abnormal with his prostate. A subsequent test with an urologist indicated there wasn’t anything wrong. But later, when a second urologist said Gauthier would need another biopsy, anxiety set in.
“I was diagnosed November 3, 1996,” says Gauthier. “Some dates stick to you.”
Gauthier is one of a handful of volunteers who founded a support group for gay men with cancer. The monthly drop-in takes place at Wellspring, a cancer support centre in the heart of the village.
As improved treatments prolong the lives of men living with HIV/ AIDS and a new generation of gay men grows older, more and more men will be dealing with cancer, and prostate cancer in particular. It is the most common form of cancer among men and the second deadliest after lung cancer.
So far, there’s been little research around gay men and prostate cancer, and no specialized programs.
“Lesbians have been way ahead of us” in terms of advocating for queer-inclusive medical care, says oncologist Charles Hayter.
“Most men would enter the cancer system at Princess Margaret or Sunnybrook [hospitals]. There’s nothing on the medical side that would identify them as gay. There’s no special path.”
Yet gay and bisexual men coping with prostate cancer face unique issues, particularly around sex and relationships. Many queer men see and use the prostate as a sex organ so its loss can have a direct impact on sexual enjoyment, in addition to concerns about loss of libido or impotence.
There may also be emotional issues involved in a cancer diag-nosis, prostate or otherwise, which are particular to queer men.
“The diagnosis of cancer and the disclosure of that to the patient’s partner or family is going to bring up a lot of coming out issues again,” Hayter says. “For example, if a man was estranged from his family when he came out and is now diagnosed with a life threatening illness, all that stuff is going to come back to the surface.”
When Gauthier was first diagnosed in 1996 he turned to the Toronto chapter of Man To Man, an established, national men’s prostate support group. He says it just wasn’t for him.
“Gay men tend to be more open about their types of sexual activities, which I don’t think — maybe I’m mistaken — that straight men in their 60s and 70s would be comfortable talking about,” he says. “I felt I could be rejected and, by the same token, I felt I could offend them.”
Instead, Gauthier counted on a few close friends to get him through. “I was not at a loss for support,” he says.
Pearse Murray, a fellow cofounder of the Wellspring gay men’s support group, was diagnosed with prostate cancer four years ago. Man To Man was the main place he went to for support.
“We laugh a lot. Laughter is very important,” he says, adding that he never experienced homophobia at the group.
Gauthier was able to beat back the disease for several years, but in September 2003 he learned that his cancer was back. This time around, Gauthier, who had trained in peer support and group development through years of volunteering with the AIDS Committee Of Toronto (ACT) and as a union activist, started thinking about starting a support group for men facing all types of cancer.
A series of events built momentum for the new group: the lesbian breast cancer support group at the Metropolitan Community Church Of Toronto had recently moved to Wellspring, Man To Man hosted a town hall meeting at the 519 Community Centre to reach out to the queer community, and other gay men living with cancer — like Murray, also a former ACT volunteer — were also thinking about the need for a support group for gay men.
When a group of interested volunteers approached Wellspring with the idea the centre was “100 percent supportive,” says Gauthier. The first meeting was last September.
“We were quite surprised,” says Helen Brent, Wellspring’s manager of outreach and program policy. “Seventeen men came to the first meeting and if five or six people had come, I would have been happy. This really shows there is a need for this service.”
According to Hayter, men’s support groups are a relatively new phenomenon.
“The whole prostate cancer support movement started after the breast cancer movement,” says Hayter. “Women started to form breast cancer support groups and become very activist in the late ’80s or early ’90s.”
Men, straight or gay, may find it more difficult to talk about their feelings than women.
“Sometimes women are a lot more open to talking about themselves than men are,” Murray says. “Sometimes it’s a big secret when you have cancer, especially prostate cancer.”
“It’s hard to tell your friends because you’re afraid of their reaction,” says Gauthier. “You’re afraid they’ll take pity on you… or be hurt.”
The group is now holding monthly meetings, including sessions with guest speakers.
Gauthier would also like to help found similar groups in the west, perhaps Calgary or Vancouver.
“You just have to accept whatever happens to you and to everything there’s a positive,” says Gauthier. “No matter whether you’re diagnosed with HIV/AIDS or cancer it’s your life, today. You never know what’s going to hit you tomorrow.”