I was an interloper. A woman. With no prostate—obviously. And yet here I was, sitting in a support group for men with prostate cancer, having been invited along by my septuagenarian neighbour.
Mind you, I wasn’t the only female in the room.
“He gets no sympathy from me,” the woman on my left said, nodding at her husband with feigned indignation. “Six months on hormone therapy and he couldn’t even handle the hot flashes. Now he knows what I’ve had to deal with for these past ten years!”
The man opposite me leaned forward in his chair. In his mid-sixties he was tall with a silver-streaked beard. “When I told my wife the treatment meant I couldn’t get an erection anymore, the first thing she said was, ‘Thank goodness.’”
There was ironic laughter, with looks of familiar empathy passing between the men.
Erectile dysfunction and anorgasmia (inability to have an orgasm) are common side-effects of prostate cancer treatment. The incidence varies depending on the man’s age and pre-morbid sexual function but long-term erectile dysfunction is estimated to affect anywhere from 20 to 70 per cent of men following nerve-sparing prostatectomies or pelvic radiotherapy.
The side-effects of androgen deprivation therapy—which is often required if the cancer has spread beyond the prostate—are even more profound. In addition to sexual dysfunction the hormone injections can cause loss of muscle, reduced body hair, hot flashes, gynaecomastia (breast enlargement) and genital shrinkage.
Studies have shown that sexual dysfunction can negatively impact a man’s quality of life, causing reduced self-esteem, embarrassment and depression and, in some cases, even increase the risk of suicide. But the men at the support group I attended needed no studies to tell them this.
Over the following hour, as I listened to them discuss a number of issues, it was clear that the fear and reality of impaired sexual function was an overwhelming concern for most of them.
The pros and cons of prostate cancer screening are a contentious issue within the medical community, with long-standing concerns regarding potential over-diagnosis and over-treatment of early and slow-growing prostate cancer cases, resulting in excessive costs and unnecessary morbidity.
In 2016 the Cancer Council of Australia released a new set of guidelines that recommended against routine screening for prostate cancer for most men. Somewhat confusingly these guidelines, which were endorsed by both the Urological Society of Australia and New Zealand and the Royal Australian College of General Practitioners, still left the onus about deciding whether to undergo screening on each individual man.
Given that men have traditionally been urged to be more proactive about their health, these conservative and somewhat ambiguous guidelines have left many men feeling confused about what they should do.
“Most men still want screening to be done, but it is a very controversial thing,” Surfers Paradise general practitioner Dr Mark Jeffery told me. He acknowledged the concern about unnecessary prostate biopsies, but is reluctant to recommend against screening due to his own clinical experience.
Breast cancer receives more attention, and twice as much federal research funding compared to prostate cancer, yet prostate cancer is actually a bigger cause of mortality in Australia. It is the most common cancer diagnosed in Australia with over 17,000 new cases per annum and the third most common cause of cancer death”—approximately 3500 per year. [Marvin: we can substitute US statistics in this paragraph]
The cause of prostate cancer is unknown and likely multifactorial. Age is the main risk factor, with diagnosis steadily rising in men in their 60s and 70s, eventually affecting one in six men if they reach the age of 85. Genetics also plays an important component as does ethnicity, obesity, diet, smoking and possibly multivitamin use, which may actually increase rates.
Recently a potential link has even been identified between acne and prostate cancer. “If a man suffered severe acne in late adolescence he is six times more likely to develop prostate cancer as he gets older,” says Gold Coast-based dermatologist Dr Michael Freeman, who advises middle-aged men with acne scars to have prostate cancer screening.
Dr Aneta Suder, medical oncologist at the Royal Brisbane and Women’s Hospital and senior lecturer at the University of Queensland, advises men to be proactive. “There is that misconception that prostate cancer is a disease of older men but we do see a younger cohort of patients as well,” she told me. “Eighty-five per cent of patients can be cured if their prostate cancer is picked up early, so we always encourage men to make sure they listen to their bodies and look out for symptoms like persistent back pain or weight loss.”
This was the case for communications manager Steve McKee, who had a routine blood test that revealed elevated PSA levels. The then 43-year-old underwent a prostate biopsy, which came back negative for cancer. But because of his blood test results he was advised by his urologist to have a second biopsy. McKee initially declined.
“I knew prostate cancer was an old man’s disease and usually slow growing, so I chose to have yearly PSA-level blood tests to monitor it and deal with the problem later,” he told me.
When a further blood test showed that his PSA levels had risen, he agreed to another biopsy. This revealed locally advanced prostate cancer, which required a radical prostatectomy.
“Looking back at myself I should have taken more responsibility for my health because, if the cancer had spread, I would have cheated my family over something I could have dealt with quickly and easily,” McKee, now 47, said.
The father of two considers himself lucky to have escaped urinary incontinence and erectile dysfunction following his surgery. He admits, however, that sex is no longer as satisfying due to the phenomenon known as “dry orgasm,” a consequence of the prostate being removed resulting in a lack of prostatic fluid within the semen.
Sydney-based urological surgeon Professor Henry Woo says that there are things that can be done to minimise sexual dysfunction following prostatic surgery. These include pelvic floor exercises, penile rehabilitation, medications to aid with erections as well as therapeutic treatments like penile massage and sexual therapy.
“We have an ageing population and the general fitness level of an average 70-year-old is the same as a 60-year-old’s was twenty years ago,” says Woo. “So it’s not surprising that, as we get fitter, any impact on sexual function is going to be of greater concern than it would have been to the previous generation.”
Despite the new guidelines Woo believes that men should have their first PSA blood test when they are in their 40s. “The PSA blood test is a very useful risk assessment tool,” he said. “If a man’s PSA is below the median for his age group, that positions him in a low-risk group for getting prostate cancer, and you could actually quite reasonably not check him again for another ten years.
“Once upon a time we used to treat all men diagnosed with prostate cancer but we now know that that is wrong,” he continued. “Many men diagnosed with prostate cancer will die with the disease, rather than from it, and some of the low-grade prostate cancers do not have to be treated at all. We can manage them via active surveillance and find the right balance between avoiding the over-treatment of prostate cancer, yet at the same time not losing that window of opportunity to treat a prostate cancer that might later declare itself as being more significant.”
One of Woo’s patients is Qantas international pilot Justin Carter, 56, who was diagnosed a year ago with localised prostate cancer.
Carter, whose own father died of prostate cancer, is comfortable with his specialist’s plan to monitor his cancer with alternating MRI scans and biopsies every six months to look for changes, rather than undergoing a prostatectomy.
“I consider myself incredibly fortunate that my cancer was found early and that I didn’t actually have to have more radical treatment,” he told me. “I’m confident enough that if I do need treatment at some stage, that it won’t be too late because they’re watching me.”
Prostate cancer is not the only condition affecting the prostate gland that can result in sexual dysfunction. Benign prostatic hyperplasia, or prostate enlargement, causes difficulty in urination and is estimated to affect 50 per cent of men over the age of 50 and 90 per cent of men over the age of 80. Medications used for its treatment can cause loss of libido, erectile dysfunction and gynaecomastia. If medications are unsuccessful, surgery, in the form of a transurethral resection of the prostate (TURP), is often required. Approximately 20 per cent of men who undergo this procedure will experience erectile dysfunction and 75 per cent will experience retrograde ejaculation.
An alternative to surgery, called Rezum, which appears to preserve sexual function, has just become available in Australia. In this procedure a tube is inserted into the urethra and small volumes of sterile steam are injected into the prostate, causing shrinkage of the tissue.
Retired businessman Kerry Hayes, 64, was the first man to undergo this procedure in Australia after years of suffering difficulty in urinating, poor sleep and the sensation of always having a full bladder. “I found myself apologising to potential partners for having to use the bathroom so frequently—imagine that for a first date conversation,” he told me.
“I’m quite sexually active so I didn’t want to risk that function,” said Hayes, who had his procedure done in March this year at the Sydney Adventist Hospital by Professor Woo. “The results have been everything I hoped for. I started noticing big improvements about two weeks after the procedure and there have been smaller gains since then.”
Rezum isn’t suitable for treatment of prostate cancer however, something I thought about as the support group I attended with my neighbour concluded at midday. A hot bright sun outside shimmered off the surface of the Nerang River as Meyers and I walked slowly back to his car for the drive home.
“At my age, I’m just grateful for the life I’ve had,” Meyers said, easing himself in behind the wheel. He has metastatic prostate cancer and is careful with his bones.
He chuckled as he pulled out onto the road. “Maybe women were right all along,” he said. “Hugging is underrated. Even though I can’t be sexually active any more I still enjoy having my wife lying in bed next to me.”
Suvi Mahonen is a freelance writer and former News Corp journalist based in Surfers Paradise, QLD. This article first appeared in The Australian. Used with permission of the author.