No need for men to suffer alone
In 1994, Pointe Claire resident Charles Curtis got the result from what was then a relatively new test for something called the PSA level in the blood.
Prostate specific antigen, PSA, is the substance produced almost exclusively by certain cells within the prostate gland.
When my own reading recently rose to six from four and my prostate gland was found to be slightly enlarged, the urologist suggested a biopsy to remove and examine 10 cells. They were benign. When Curtis, 84, had his first PSA reading, he remembers it exactly as 14.75.
“I was 66. I was fine, no symptoms. I had a biopsy and it was positive. “The options in those days were radiation—the broad type, not the new conformal direct beam—or surgery.”
That class of radiation therapy, which Curtis rejected, directs X-rays not only at the tumour but at nearby healthy tissue. Instead he opted for radical prostectomy—surgical removal of the prostate gland and some of the surrounding tissue.
“It was very successful in my case and I haven’t had any treatment since,” Curtis said.
Doctors are busy professionals, and Curtis remembers having many unanswered questions after his surgery.
The idea of a support group was initiated by his then-urologist, Irwin Kuzmarov, and Curtis be came an active member.
“The idea is to talk with newly diagnosed patients who usually have no information at all. That was our complaint at the time. We went national in ’95 with the Canadian Prostate Cancer network.”
The Montreal West Island group has been going strong since then. It meets once a month and 30 to 40 people attend to listen to guest speakers, ask questions and discuss issues. Some spouses attend.
“Doctors who speak to our group will take the time after their presentation to talk with people individually.”
It’s also a place for patients who have received biopsy results to air their concerns and discuss their options with professionals and other men who have gone through it.
“I have been living with this for 18 years, a prime example of ‘successful’ treatment.
“I answer the support group line every day and I usually have quite a long chat with newly diagnosed people. I have time, I’m retired.”
“Part of the treatment”
Prostate cancer, which may be controlled if detected early, can be as challenging to men as breast cancer is for women.
It raises social and psychological issues that can be overcome through learning about its characteristics and dialogue with professionals, best discussed in a peer group setting.
Irwin Kuzmarov, now director of professional and hospital services at Santa Cabrini and an assistant professor of surgery at McGill University, was instrumental in setting up one of the first support groups in the Montreal region, at the Lakeshore General Hospital.
“Men and their significant others needed to talk about their illness,” he said in a recent email.
Apart from fear about what lay ahead, patients needed “guidance through the maze of treatment options, the changes in their bodies, their feelings of masculinity, sexuality and sense of self-worth.”
Men need help to understand scores in the PSA test, the impact of radical surgery, less invasive laparoscopy or open surgery, Kuzmarov said.
There also are alternative therapies to surgery that can be explained by professionals.
Kuzmarov sees support groups as “part of the treatment.”
“They allowed people to express their triumphs and defeats, highs and lows. People could ask specialists what radiotherapy will do to them. Is urinary incontinence after radical prostatectomy normal? What should they do about their impotence? What exactly is hormonotherapy?”
Meetings were launched with other professionals, and Kuzmarov’s wife, Donna, a McGill counselor with expertise in setting up support groups.
• West Island Prostate Cancer Support Group: Meets the fourth Thursday of every month, September to June, at the Sarto Desnoyers, 1335 Lakeshore, Dorval. 514-694-6412.
• Jewish General Hospital: Ten-week courses, on Wednesdays. Isabelle Gregoire, 514-340-7558.
• Montreal Prostate Cancer Support Group: Second Monday of each month at CHUM Campus Notre Dame, Pav Mailloux. Carole Bourgon, 514-890-8000 x 28138.