For most men, a diagnosis of prostate cancer is devastating on several levels. Not only does the cancer threaten their lives but the treatment — which may include surgery, radiation, chemotherapy and hormone therapy — too often leads to deeply personal, life-changing conditions such as loss of libido, erectile dysfunction or urinary incontinence.
“They say men don’t like to talk about these things,” said Jon Henry, 53, of Hampden, a Husson University administrator who was diagnosed with prostate cancer in 2007. But Henry thinks that reticence is more myth than reality. Once men have a supportive and confidential environment where they can air their personal questions and concerns, he said, they are more than ready to talk.
Henry knows this because he used to facilitate a support group for men and their wives and partners at the Lafayette Family Cancer Center in Brewer.
“We had some great discussions about sexuality, incontinence, erectile dysfunction and all that,” he said. “We had a great group of men who found fellowship with each other and their partners.”
That group ran out of funding and administrative support a couple of years ago. But Henry hopes to build on its success in a new men’s cancer group being hosted by the Bangor YMCA, which he will help facilitate. Meanwhile, he’s about to begin on a new round of radiation treatment for a recurrence of his cancer, after several years of being cancer-free.
The new group, called the Men’s Cancer Network, is an extension of the Bangor Y’s Caring Connections breast cancer support group for women, a longstanding partnership with Eastern Maine Medical Center in Bangor.
Bringing the conversation out of the closet
Robin Long, who has headed up Caring Connections for 20 years, said it has played an important role in reducing social stigma around breast cancer and improving treatment options and support services.
Like prostate cancer and its complications, the topic of breast cancer was taboo in this country for many years, she said, a source of deep personal shame and embarrassment.
“It was simply not talked about,” she said. “It was a personal part of a woman’s body. There was really only one treatment: a radical mastectomy.”
There was a lot of societal “shock and shame associated” with the both the diagnosis and the treatment, she said, and women sometimes went into seclusion to hide their condition and to avoid pity, judgement and gossip.
It was former First Lady Betty Ford’s 1974 revelation of her own breast cancer diagnosis and treatment that broke the long silence. “When that happened, breast cancer came out of the closet,” Long said. With its heightened visibility, more women demanded screenings, funding increased for breast cancer research and new treatment options were developed.
“But other cancers haven’t gotten as much attention,” Long said, including prostate and other genitourinary cancers, such as penile and testicular cancers, that are specific to men. It’s important to give men and their partners the opportunity to discuss the particular challenges of these cancers, she said, and to develop the kind of mutual support that evolves in a group of people with a shared concern.
Fears “strike at the heart” of male identity
Dr. William Sturrock, a men’s health consultant at EMMC, said men’s cancers and the complications of treatment are fearsome topics.
In the same way that breast cancer threatens women with physical disfigurement, societal judgment and the loss of their feminine roles, men’s cancers “strike right at the heart of our self-identity as men,” he said. The prospect of losing sexual function or having to wear an adult diaper in middle age “is a large pill to swallow,” he said.
But while some men may be reluctant to share their experiences or ask for support, that tendency may work against them, Sturrock cautioned. For one thing, the treatment and prognosis for different cancers vary widely. Testicular cancer, for example, is more common in young men and is often curable without impacting sexual performance or fertility. In other words, the fear surrounding some of these cancers may be worse than the reality.
Even among prostate cancer patients, who are typically middle age or older, the prognosis, treatment and complications vary significantly, depending on the stage and severity of the cancer. Men who have heard harrowing stories about someone else’s experience may find their own is less difficult, or learn that there are creative solutions for managing the complications.
Sturrock, who will speak about prostate cancer at the first meeting of the Men’s Cancer Network, hopes men will overcome their reluctance and check out the new group. There will be plenty of time for questions and discussion as well as an opportunity to speak with him privately.
“It can be very helpful to talk about these things,” he said.
‘Back to normal’
For Ed Brazee of Orono was diagnosed with advanced prostate cancer in 2010. He’s now cancer-free, and said that talking with others about his fears was critical to maintaining a positive attitude as he went through treatment.
Although he didn’t participate in a formal support group, Brazee did find a casual, friends-of-friends network of men and couples who were willing to share their experiences and insights with him.
“It was big help to hear their personal stories and how they dealt with it all,” he said. “It can pretty much be the end of your sex life, and I was concerned about that. Plus, the whole cancer thing was really concerning.”
Brazee’s treatment included 43 consecutive days of radiation therapy. That was followed by hormone-suppression injections every six months for three years to knock out his testosterone production and block the re-growth of cancerous prostate cells.
Testosterone, however, also plays a significant role in men’s sex drive.
“That hormone therapy does quite a job on your system,” Brazee said, but he and his wife, Connie, adapted.
“Let’s just say there’s more than one way to skin a cat,” he said. “Sex and intimacy are such an important part of a relationship, you don’t want to just put it all on hold.”
Once he completed hormone therapy, he said, “things got back to normal in a few months.”
Despite the advanced stage of his prostate cancer when it was found, his treatment and recovery were relatively easy, and, apparently, successful. He gets checked twice a year now, but so far he’s gotten a clean bill of health.
“I consider myself very lucky,” he said. “A lot of guys have a much harder time.”
The first monthly meeting of the Men’s Cancer Network will take place from 6 to 7:30 p.m. Tuesday, April 4, at the Isaac Farrar Mansion at the Bangor YMCA on 2nd Street in Bangor. Participation is free and open to men and their partners. For more information, contact the Bangor YMCA at 941-2808 and ask for Caring Connections.