For most men, a diagnosis of prostate cancer comes with news of an excellent survival rate. But the challenges of the illness can run far beyond the cancer itself. By Michele Tydd.
Combatting prostate cancer
Gary Conyers lost his father and sister when a truck ploughed into their car while on a family holiday in Victoria when he was 14. At 20 he lost his mother to cancer and soon after he left Australia to fight in the Vietnam War where he saw mates die beside him.
In 2008, aged 62, Conyers faced yet another personal battle – the loss of his identity as a husband and man when he was diagnosed with prostate cancer.
“My wife and I were living in Armidale [in northern New South Wales] at the time and we knew nothing about the disease or how the operation to remove the prostate would change our lives,” he recalls.
Like many men, Conyers suffered life-changing side effects that included incontinence, erectile dysfunction, diminished libido, depression and anxiety.
“All I can remember of those first six months was the nagging thought, ‘I’m not a man anymore.’ ”
His wife, Robyn, also became anxious and distressed while helplessly watching her husband fall into a heap.
This is not an unusual scenario. Despite the significant medical advances to treat prostate cancer, many health professionals believe too little is done to ensure survival means living well for not only the man involved but also his partner.
In 2006, a team of researchers, headed by consultant psychiatrist Dr Jeremy Couper, then of the University of Melbourne, carried out the first study of its type in Australia. It involved 47 couples and measured depression and anxiety after diagnosis of potentially curable prostate cancer, and again six months later.
It recommended interventions for both patient and partner because the partner’s level of distress straight after diagnosis was higher than the patient’s, but lower than the patient’s six months later.
Couper, now the clinical associate professor of psychiatry at the Australian National University and chair of the Psycho-oncology Co-operative Research Group (PoCoG) based at Sydney University, says the study identified a new direction focused on a more holistic approach to treatment that takes into account the sometimes severe psychological impact prostate cancer can have.
However, he says, the challenge remains to have prostate cancer – the most common cancer in men – elevated to priority status for funding along with other common cancers.
Since 2000, prostate cancer has received a total of $148 million from the National Health and Medical Research Council compared with $296 million for breast cancer. The NHMRC is the largest funder of medical research in Australia
This discrepancy between the most common cancer in men and women has caused frustration for researchers such as Couper.
Following on from the findings of the 2006 study, he led a study on a therapy-based intervention for a small group of prostate cancer survivors and their partners. The program involved trained mental health professionals who helped couples develop strategies to cope with the physical and psychological issues they were likely to face over the coming months and years.
Most men suffer some degree of erectile dysfunction after prostate surgery because of the trauma to the soft erectile tissue and nerves. Others experience incontinence due to surgical changes to the anatomy of the bladder. Many receive hormone treatment to suppress prostate cancer from advancing and experience problems such as feminising changes to their body, a loss of libido and even mood disturbance and cognitive changes. Others have bowel disturbances resulting from radiotherapy targeting their prostate gland.
Couper says despite the intervention having proved effective for many of the couples, especially those aged under 65, his team could not secure funding to upscale and consequently the program was never implemented. His psycho-oncology research group is now taking a different tack to reach research and clinical colleagues across Australia to build up the mental health workforce expertise in dealing with cancer.
“So with prostate cancer, for example, better understanding among clinicians will mean they won’t need a tutorial from the patient in front of them,” says Couper.
Part of the problem with prostate cancer is the lingering mystique that keeps it somewhat in the dark.
“A lot of progress in the community has been made in talking about and understanding breast cancer experiences, especially when it is raised by celebrity females, but that hasn’t happened as much with prostate cancer,” says Couper.
The prostate gland is about the size of a walnut and surrounds part of the urethra, the tube that empties urine from the bladder. Its function is to make fluid that is part of semen.
Initial detection of prostate cancer is commonly through a blood test for elevated prostate-specific antigen (PSA) and then confirmed by a biopsy.
Nearly 18,000 Australia men will be diagnosed this year and they will have a 95 per cent chance of surviving at least five years, according to the Australian Government cancer health website.
While earlier detection is likely to shake off the status of prostate cancer as an “old man’s disease”, it will also mean more men with the disease in the workforce, some struggling to cope.
Nick Hartgerink, of Kiama Downs, south of Sydney, was running his own communications business when he was diagnosed with prostate cancer at 53.
The now healthy 62-year-old says his cancer was picked up because of a yearly PSA test his brother-in-law urged him to start having at 40 due to a family history of the disease.
“I was in complete shock because I had no symptoms,” he recalls.
As a well-connected man in the community, Hartgerink says he drew huge benefit from prostate cancer survivors – friends and strangers – who reached out.
“They were really helpful in preparing me for the surgery itself and getting my head around what to expect regarding the side effects.
“I don’t think the average man has any idea what the prostate does in his body. It’s just not something they talk about beyond the odd joke about the old-style anal checks by doctors.”
Hartgerink was able to return to work just weeks after the surgery but there were challenges ahead in his personal life.
He was left with erectile dysfunction but dispensed with artificial aids soon after a distressingly painful reaction to the substance in a penile injection.
“I guess libido does diminish, sometimes because of the reality of the situation,” he says. “But I’ve got a wonderful wife and we often talk about it and she agrees that the fact we don’t now have a sexual element to our marriage hasn’t diminished our love or how close we are.
“Some women really suffer though when their partners are struggling with loss of sexual function and understandably become difficult and irritable. I also see it’s a real problem for single men, especially if they want a partner but feel that after treatment nobody will want them.”
He says with the right support there can be a good life after prostate cancer, and he is well aware he could have missed that if not for the routine check nearly 10 years ago.
“Sometimes I’m sad about what I’ve lost, I won’t pretend I’m not, but it’s not the be-all and end-all. Being alive is far more important,” says Hartgerink.
Gary Conyers has also adapted to his new reality. His turning point was finding a friendly pharmacist in Armidale to talk to about his worries, and soon after he and Robyn set up a support group they ran for five years until they moved to Queensland.
Robyn says she is a bit of a loner and chose to internalise her early anxieties, but working with Gary to raise awareness helped her as well.
As for the loss of a sex life, she says she doesn’t need that to know her husband “loves her to death”.
“We still hold hands when we walk down the street,” she says.
This article was first published in the print edition of The Saturday Paper on April 28, 2018 as "Gland tidings".
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