When Richard Wassersug was diagnosed with prostate cancer more than a decade ago, he had little idea how profoundly it would change his life.
The university professor got the grim news when he was 52 and set out on a treatment course that included a radical prostatectomy, radiation and a regimen of potent drugs to block the production of testosterone.
Wassersug, now 64, had a good grasp of what was involved in the surgical procedures, the recovery and the potential side-effects.
But he says he received little information from the various health-care providers along the way about how the drugs, in particular, would affect a fundamental part of his life — his sexual health.
"I was not prepared at all and I teach anatomy at a medical school," he said from his office at Dalhousie University in Halifax, where he is a professor of anatomy and neurobiology.
"My physician didn't bring it up at all. It was remarkable how little interest he had. I went from a urologist to a radiation oncologist to a medical oncologist…This was not part of the discussion."
It's an issue some in the medical community are trying to address through screening tests and education programs aimed at better informing men how cancer and its treatments affect sexual activity.
Deborah McLeod, a clinician-scientist who focuses on sexuality and cancer, says she doesn't think male patients are given enough information on the sex-related issues they might confront as a result of their treatment.
She cited a 2007 study that found that 96 per cent of health professionals identify sexual concerns as being within the scope of their practice, but only two per cent of those address it.
"There are all these different levels in the ways in which different cancers can affect sexuality," she said in Halifax, where she works for the Capital Health Cancer Care program.
"Unfortunately as a health-care group, we don't attend to this at all. Even when we do, we only think about it when it involves sexual organs."
Not enough information
Peter Mallette, head of Prostate Cancer Canada's Atlantic office, was diagnosed with the disease in 2005 and said he felt the need to ask his surgeon how a radical prostatectomy would affect his sex life.
"I was being given information from my doctor about prostate cancer and certainly contained in that information were some key points about some side-effects of surgery," he said.
"But I felt the desire to have that conversation. The information, to me, just wasn't enough."
Mallette said some of the most important information he received came from other men dealing with cancer, adding that discussions about sexual health come up regularly at his support group.
The effects of cancer and its treatments on sexual well-being can be as varied as the many forms of the disease, ranging from the physical to the psychological.
For many men, including Wassersug, treating prostate cancer can result in some form of erectile dysfunction or castration.
A prostatectomy, or removal of all or part of the prostate, can disrupt the nerve supply involved in erections.
Chemotherapy can impact fertility, while any pelvic surgery for prostate, colon, colorectal or bladder cancers can cause scar tissue that can affect blood circulation to the sexual organs.
Radiation to the pelvic area damages blood vessels, which can impede erections.
Drugs help, up to a point
Drugs can help restore sexual function, but the effects can carry a hefty psychological impact for those whose identities are strongly tied to their sexual ability.
McLeod said men facing sex-related challenges linked to their cancer generally tend to withdraw and not talk about their concerns, particularly if they are embarrassed by them.
Prostate cancer treatment can lead to incontinence, physical disfigurement, diminished libido and hair loss, all things McLeod says take a toll on a man's psychological well-being.
"These impacts sexually on men — to a greater extent than women — cause them to hide and be silent," she said.
After surgery and radiation, Wassersug began taking anti-androgen drugs — chemicals that slow the growth of prostate cancer cells by depriving them of testosterone.
Soon after, his mood soured, he lost hair on his arms and legs, muscle fell away, he gained weight and his memory suffered.
Other men experience breast development, loss of erectile function and sexual desire, heightened emotions and hot flashes.
"Men are not well educated about these (drugs)," McLeod said. "The education tends…to be not really reflective of how profoundly difficult this is."
Wassersug, who has redirected his research and published extensively on cancer and sexual health, said the toll cancer and treatment took on him contributed to depression and, ultimately, the end of his marriage.
He's concerned that it's an outcome many couples face as they grapple with the fear, heartache, confusion, anger and uncertainty surrounding the fallout of cancer treatments.
National studies underway
McLeod is involved in two national initiatives to improve the education of health-care workers on the effects of cancer on sexuality and to identify patients who might need help.
The first is a screening of cancer patients to identify distress, whether it involves depression, fatigue, financial worries, relationship troubles, or intimacy and sexual concerns.
The survey is being introduced in cancer centres across the country, with Halifax's being one of the first to use it.
A high score would trigger an intervention by staff or a referral to a counselling team, McLeod said.
She is also the project leader of an education program for graduate students and practising health professionals that focuses on psycho-social oncology, with the latest course looking at sexual health counselling.
"The interest in the course is just huge," she said. "People need to be talking about this, but the degree to which they do varies tremendously."
An online chat site moderated by health professionals — http://cancerchatcanada.ca — gives patients and their spouses an anonymous forum to discuss certain issues, like sexual health.
For Wassersug, he says he has adjusted to the challenges of having a sex life while on hormonal therapies and encourages people to think creatively about their sexual activity.
"I realized that as a long as I could see myself as different, I could adapt to it," he said.