LINGERING SIDE-EFFECTS ADD STRESS FOR PROSTATE CANCER ‘SURVIVORS’
Man living with disease for 26 years says that term can foster ‘false sense of security,’ writes Larry Pynn.
Len Gross of Burnaby is an optimist, but also a realist, about prostate cancer as he forges deeper into old age.
Gross was diagnosed in 1992, two years before retirement, putting him now among B.C.’s longer-lived survivors at 26 years.
In his 80s, he is one of the lucky ones, if that term can ever apply to men with prostate cancer. He had his prostate removed, and his future looks bright based on continued low PSA test scores.
But even under the most optimistic scenario, can anyone completely turn their back on cancer?
Gross dislikes the term “cure” because he’s seen prostate cancer come back in men who thought they’d beaten it. “I just cringe at the use of the word. It just gives men a false sense of security.”
He talks about one friend who had his prostate removed and lived the past decade with a very low PSA (prostate specific antigen) score — long enough to think he was cured. The cancer turned aggressive three years ago, and he’s now on an experimental hormone therapy. “It is a pretty massive shock to be told that the cancer has returned, somewhat akin to the initial shock of being diagnosed.”
Lisa McCune, provincial director of the patient experience program with B.C. Cancer, said that the program has struggled with the term survivorship. “Treatment doesn’t always end. You just go on longer treatment.”
A report released in January by the Canadian Partnership Against Cancer found that 70 per cent of cancer patients report having emotional challenges after their treatment ends, including worrying about cancer returning, depression and changes in sexual intimacy.
“It’s almost always in the back of their head,” McCune said. “Even if they have a sore throat and their cancer was in their prostate, ‘Is this sore throat a sign of my cancer?’ It can impact all aspects of life.”
The Canadian Cancer Society describes a cancer survivor as someone who has finished and is recovering from their active cancer treatment, is on maintenance therapy, is having ongoing treatment for cancer that is stable and slow growing, is on active surveillance or is in remission.
The society also has a confidential program that allows patients to speak with a trained volunteer who has had cancer.
According to B.C. Cancer Registry statistics for 2015 — the last year for which full information is available — 566 men died of prostate cancer, including 57 per cent over age 79 and 40 per cent aged 60-79.
There were 2,675 cases diagnosed in 2015, the most in the group of people 60 to 79 years old, at 68 per cent.
Thanks to medical advances, men are living longer than ever with prostate cancer.
According to Prostate Cancer Canada, the rate of prostate cancer deaths has gone down by 50 per cent over the last 25 years, and survival is close to 100 per cent after 15 years if the disease is caught early.
“The prevalence of people living with the disease is greater than any other cancer out there,” said urologist surgeon Dr. Martin Gleave, executive director of the Vancouver Prostate Centre.
“You’ve got survivorship issues. How do you help with the effects of treatments, the stress of the cancer on quality of life?”
As of 2014, there were more than 25,000 B.C. men alive who had been diagnosed with prostate cancer in the previous 10 years. The latest estimate is that 620 men died of prostate cancer in 2017.
ONEROUS SIDE-EFFECTS
Surviving prostate cancer doesn’t come with a free pass.
Gross reveals that sex is kaput and he wears a pad 24/7 because of incontinence after removal of his prostate. Of the side-effects of cancer treatment, he joked: “They’re progressing successfully.”
He tries to take it in stride. “You have to go into the situation knowing there are going to be some damages. How am I going to cope with them? You have to make up your mind, if you’re going to live successfully you have to make some accommodation. It’s not causing me to be stressed out with the world, so you move on as best you can.”
Rene Andersen, 73, of New Westminster was diagnosed in 2012, and rejected the two common treatments for prostate cancer — surgical removal and brachytherapy radiation — in favour of high-intensity focused ultrasound, known as HIFU, performed privately in Canada in Toronto, but not covered by the B.C. medical system.
“The procedure cost me the price of a new car, $23,000 plus airfare,” Andersen said. “It essentially cooks the prostate cancer cells.” His PSA test score has continued to rise, and he suffers from erectile dysfunction.
Nigel Woods, 66, a Whistler heavy-construction contractor, also took the HIFU route, at the University of California’s Verdugo Hills Hospital in Los Angeles County.
Interviewed from his hospital bed, one day after undergoing HIFU surgery, including the local removal of lymph nodes, Woods said that he had two biopsies in B.C., one that resulted in a bad infection, before getting confirmation he had prostate cancer. “I was sicker than a dog, high fever. It was terrible.”
He opted for HIFU because he could get the treatment sooner and because he considered it less invasive with fewer side-effects. “Anyone I spoke to who had a prostatectomy, your sex life is pretty much gone.”
In Kelowna, Mike Brown, 70, had low-dose-rate brachytherapy in 2010, a procedure that permanently implants radioactive seeds into the prostate, along with external beam radiation.
Today, he takes tamsulosin to help maintain a normal flow during urination, and continues to have loose bowels from the radiation. He remains sexually active with his girlfriend even though his sex drive is diminished — with age likely playing a part — and his erections are not as firm as they used to be.
One big change: “Orgasms are less intense but more prolonged, lasting maybe 10 seconds instead of one.”
Viagra and similar drugs do work, but he cannot afford them.
His PSA scores remain very low and he’s confident prostate cancer won’t take his life.
Gross and Andersen lead prostate cancer support groups, affiliated with Prostate Cancer Foundation B.C. (prostatecancerbc.ca), offering their knowledge about the disease to those recently diagnosed and trying to navigate a complex system with multiple treatment options.
Said Gross: “To hear people thank you for sharing your experience ... to give them hope is really quite rewarding. It gives you a bit of a high.”
Andersen warns men that family doctors are not necessarily “tuned in” to the search for prostate cancer, through a PSA test and digital rectal exam, and patients can pay the price for a late diagnosis.
“You get a specialist and he has a clock problem,” Andersen added. “He can’t tell you everything in 10 minutes. They don’t have the time to tell you everything you need to know. You’re on your own to find resources.”
The Canadian Partnership Against Cancer report also found that up to one in five cancer patients report no one discussed different treatment options for their cancer with them. Prostate Cancer Canada is working on a followup report specific to prostate cancer, to be released later this year.
Andersen encourages men living with prostate cancer to adopt a healthy diet and exercise regimen, something that should apply to everyone regardless of their circumstances. “I’m going to take advantage of what I can do while I can and go from there. That’s how I’m thinking. Carry on.”
Russ McMurchie, 82, of Port Moody said he was diagnosed with prostate cancer in 2014, but rejected the B.C. medical system’s accepted treatments in favour of natural alternatives, including cottage cheese, maple syrup, flaxseed oil, baking soda, vitamins and supplements. He avoids acidic foods, red meats, processed sugars, and drinks only a little red wine.
“You really get tired of trying and avoiding many favourite things to eat,” he confides. His wife died of cancer in 1999 after being treated through the medical system, including with radiation, which left him leery of similar treatments.
“I tend to ignore the fact I’ve got the problem,” McMurchie allowed, noting he sometimes finds blood in his urine. “It’s been getting worse, in terms of my PSA score.” He still sees his doctor, for what good it does.
In Gibsons on the Sunshine Coast, John Roper, 79, supported his wife, Pam Proctor, since she was diagnosed with multiple sclerosis in 1973.
Now, it’s her turn to support him. He learned he had prostate cancer in 2014 after complaining about sexual difficulties.
He received hormone treatments to block the production of testosterone, on which the cancer feeds, as well as external beam radiation.
“We have a history of coping,” said Roper, noting that InspireHealth, a non-profit supportive cancer care organization, has helped. “It’s an adjustment, but something we’re able to manage in our relationship.”
He’s no longer being treated, and his PSA remains low and is being closely monitored.
“You can’t just let it go,” he said. “I don’t want to be on that rising curve again.”
Roper has practised a variety of therapies, including meditation, sauna, even coffee enemas. He also does some writing and house repairs. The couple end their day with qigong, a type of tai chi.
“We’re supportive,” said Proctor, who walks with a cane. “We look out for each other.”