It was once the inevitable collateral damage from prostate cancer treatment – the life-changing side effects that were considered the price that men had to pay to beat the disease.
By Cathy O’Leary
Incontinence and erectile dysfunction (ED) have often been the unwanted legacy of radical surgery and radiation treatment, associated with poor rates of recovery.
For some men, their quality of life has suffered so much it has made them question their decision to go ahead with aggressive treatment and left them mentally scarred with severe depression and damaged relationships.
And while medical science has found new solutions that have changed the trajectory of post-cancer treatment symptoms, many men – and even doctors – are unaware of what can be done now to restore sexual function in men.
That includes innovative rehabilitative techniques and penile implants, as well as a new technique which has been used in Melbourne to restore erectile function by removing sural nerves from the patient’s leg and grafting them for use in the penis.
Recent research commissioned by the Prostate Cancer Foundation Australia (PCFA) revealed that erectile dysfunction severely compromises the mental wellbeing of one in three men aged 40 and over.
It affects 10% of West Australian men in that age group at least once a month, and 22% at least once a week.
While there are a range of contributing factors to erectile difficulties, including diabetes, heart and blood vessel disorders, hypertension and high cholesterol, ED is a well-recognised side effect of prostate cancer treatment.
It is also difficult to get a full picture of the prevalence of ED in men post-prostate cancer treatment, partly because some men do not report symptoms or seek help, but it is estimated to affect between 25-75% of men who undergo prostate cancer surgery.
PCFA is running an awareness campaign to encourage men to seek help before and after their cancer treatment, and to challenge the view that nothing can change the trajectory of ED.
Urological Society of Australia and New Zealand president and Melbourne-based Professor Helen O’Connell is among those backing the campaign, arguing that an underlying medical condition is often the root cause of ED, with symptoms often presenting as the first sign of metabolic diseases, cardiovascular disease, high blood pressure, or high cholesterol, while stress can also be a risk factor.
“ED is also a common complication of prostate cancer and its treatment, and for some men, it can take up to two years or longer post-treatment to regain sexual function,” she said.
According to PCFA’s head of research, Professor Jeff Dunn, one in five men are likely to be diagnosed with prostate cancer in their lifetime.
“Erectile dysfunction is one of the more common potential side-effects of prostate cancer treatment, and helping men and their partners adjust to common, physical side-effects of treatment, including ED, is crucial because it can significantly affect quality of life,” he said.
“In fact, most men report their quality of life to be severely or moderately affected by ED following prostate cancer treatment.”
Dr David Sofield, a reconstructive urological surgeon at St John of God Subiaco Hospital and founding principal of Perth Reconstructive Urology, said 58% of Australian men who have experienced ED describe the condition as frustrating, while a third claim it is ‘depressing’.
“ED can lead to shame, frustration and compromised mental health, including depression, and it can influence a man’s view of himself as complete or whole,” he said.
“The new research reveals 65% of West Australian men who have experienced ED feel the condition robs them of intimacy with their partner, 39% reported it strains their relationship, while 58% reported it reduces relationship satisfaction with their partner.
“This does not, however, need to be the case, as there are many effective treatment options available to men living with ED, but timely treatment is crucial because the longer the condition continues, the more complicated it can be to treat.”
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Dr Sofield told Medical Forum that there has not been major progress over the years in preserving erectile function after prostate cancer treatment – be it radiation or surgery.
Both had very high rates of causing erectile dysfunction, and to a lesser extent incontinence.
The ageing factor
“The reason we probably haven’t made as much progress as we would want is that the average man having a prostatectomy is aged 65 and, if you assessed them, about 60% would already have some sign of ED, so their capacity for recovery is probably less,” Dr Sofield said.
“If I operated on a 45-year-old guy, most will be fine, but if it’s a 70-year-old guy, only a relatively small number are going to recover their function.”
Dr Sofield said on top of the age-related contributor, in the last 10 years there had been increased obesity, diabetes and heart problems – all of which are increased risk factors for ED.
“That’s also why our results don’t look like we’re improving much, because the background risk factors have increased pretty dramatically,” he said.
“But one of the things which has improved is with men who used to be the ideal surgical candidates to preserve all their erectile nerves – the people who had small amounts of low-risk cancer – we no longer operate on them, so we preserve function in those guys really well now.
“The people we operate on now – those with more advanced and aggressive disease – aren’t such great candidates for trying to save their erections because their cancer is relatively advanced, so if you try to save those nerves you may well increase the risk of leaving the cancer behind.
“That paradigm has shifted quite a bit – the people who would have done really well surgically in the past, a lot of them now don’t even have surgery, so they do even better.
“The men who have often had pretty radical treatment and might be a bit older, they’re relatively more difficult to treat for their ED.”
More options now
However, Dr Sofield said there were now good treatments available to restore sexual health, with multidisciplinary rehab programs for men after surgery, using non-surgical treatment.
“I refer people to these programs, which see men pre-operatively and plan ahead, and within weeks of surgery they can be on a penile rehab program,” he said.
“And at the end of that process, if conservative options fail, one to two years after surgery, then they might come back and we look at the last option, which is a surgical implant.
“The uptake of those is increasing but is still relatively low because a lot of men and their partners are willing to go so far, but for some of them that’s a step too far and they decide if that’s what it’s going to take, they’ll probably just let it go.
“These men live a long time after treatment, so there’s a long time to live with those quality-of-life impacts, and while I still do prostate cancer surgery, my reconstructive practice is my main area of interest, and the ED and incontinence. It’s important to make men aware of the options.”
While some men were just grateful that they no longer had cancer, for other men that was not enough, and they were not prepared to accept erectile problems as their lot in life.
Dr Sofield said some GPs were surprisingly unaware of the options now available.
“Even some urologists can be reticent – I’m not sure if it’s unwillingness or lack of taking these issues all that seriously – but there’s only a minority of other urologists in WA who will refer to our reconstructive service for incontinence or ED, leaving people to fight their way through other avenues,” he said.
“It might be an under-appreciation of how those problems impact on men, but the treatment of incontinence is absolutely life-changing and you can correct it in almost everybody.
“The treatments for incontinence have much higher satisfaction rates because the problem is more impactful to begin with, and the procedures we have are simpler and more effective.”
Dr Sofield said penile implants were good but were not the same as natural erectile function and had limitations.
“A lot of my work is managing expectations around that and letting these guys know that they’re not going to be 18 again,” he said. “It’s a lot better than having nothing, and does give back control and spontaneity, and it’s reliable and predictable, but it is a bit mechanical.
“Having said that, a penile implant for the right man, or the right couple with the right expectation and motivation, is actually a great procedure.”
Perth-based Ken Bezant went down the path of a penile implant, after almost giving up on the prospect of having any semblance of his sexual function restored.
The 70-year-old father, grandfather and business owner was diagnosed with ED following prostate cancer surgery in September 2013 when he was aged 59.
“When I learned I would never regain sexual function, I was shattered. I thought my life was over and was very concerned about my future,” he said.
“The biggest challenge of living with ED was mental. Despite surviving prostate cancer, developing ED following prostate cancer treatment was totally devastating.”
Ken spent three years trialling a plethora of treatment options, each of which offered him only short-term relief.
“I went through a long process following the prostate cancer surgery to regain my sexual function but sadly it didn’t come back to a normal function,” he told Medical Forum.
As each treatment attempt failed, Ken’s frustration and desperation began to spiral. In 2016, he visited a urological specialist for further advice.
“Eventually, four years after my prostate cancer surgery, I found an ED treatment option that worked for me and it changed my life completely,” Ken said.
“Erectile dysfunction can be mentally very challenging, it changes your entire life, it changes the way you feel and your relationship with your partner. I’ve been extremely lucky with my prostate cancer journey in that I’ve had a strong, beautiful partner to help me through the process.”
Men’s support group
Given his experience of living with prostate cancer and ED, Ken founded the not-for-profit, WA-based association PCaHELP to support men and their families during and after treatment.
“What I was told was ‘wait and see’ and I went through a penile rehab program but most of the things didn’t work well for me, and the urologist had told me it could take up to two years. We eventually got to three, and he said if it’s not working now, it’s never going to, and that was devastating when he said that to me.
“I was lucky because at the support group I was running we always had guest speakers talking about this issue, so I thought why not follow up these guys and do a bit more research, which worked out well for me.
“Sadly, we haven’t concentrated enough on the mental aspects of ED.
“What I had was the last resort and it gave me back function, which was absolutely brilliant, but a lot of guys continue to suffer in silence, and that’s the worst thing they can do. We get the same thing with incontinence, I’ve had guys come back 10 years later with severe incontinence and they haven’t done anything about it, and yet they could fix it so easily.
“It’s still part of our mission to make our group known, and GPs have been hard to reach, and a lot of the work we do is with prostate cancer specialist nurses because they have our brochures and will refer people to us.
“I encourage any man experiencing ED to seek help, from your GP, your friends, and talk to anyone who you think can help you through the process because there are many brilliant doctors and treatment options out there.”
A Perth expert in prostate cancer rehabilitation, nurse practitioner and sexologist Melissa Hadley Barrett, was recently an Australian peer reviewer for new international guidelines for sexual health after prostate cancer.
The founder of the Restorative Health Clinic said some men had such bad experiences post-treatment that they almost wished they had never been told their diagnosis.
“What’s happened is that the surgeons and radiologists have got so good at curing prostate cancer but the quality of life after is often very bad,” she said.
“The thing that really worries me is that I don’t want it to deter people from getting checked.
“Radiology and surgery are so good now – the research says 30-60% will have a full recovery – but research is always at least five years behind, so we’re seeing at least a 70% recovery to their pre-op or pre-radiation function.”
Melissa started out as a remote area nurse and midwife, before becoming a nurse practitioner in a primary care practice with a GP and then deciding to study sexology and specialise in sexual health rehabilitation.
“One couple I helped, the man told me, ‘what’s the point of holding my wife’s hand when it just feels like window-shopping and I can’t follow through’, so sorting it out for them literally saved their marriage,” Melissa said.
“I started my business in 2016 just doing clinics in a couple of urologists’ rooms and before long we ended up with a clinic in every single one of them.
“I also started a podcast called The Penis Project, because men didn’t want to talk about it. One in three men aged over 50 – even if they’ve never had prostate cancer – get erectile dysfunction, but they don’t tell their mates.
“Some couples will say to me after getting help that their sex life is better now than it was before the man’s treatment, and part of that is because as we older we get a little bit slack with our sex life and we don’t pay enough attention to our partners, and then suddenly you get threatened with losing it.
“I feel like so much work has been done in this space to increase people’s longevity, but we really need to worry about their quality of life too, and people think as you get older you don’t want sex anymore.”
Melissa said erectile dysfunction often had a profound effect on men’s mental health and self-esteem.
“The women I see will often say they don’t care if they never have sex again, and they think they’re being nice to their partner, but what the man hears is ‘she’s glad it’s all over and we don’t have to do it anymore’.
“But when you speak to the woman on her own, what she really means is ‘I would rather you be alive, but if we could still have sex, I would prefer that’ but they don’t want to put pressure on the man.
“A lot of guys come in after being referred by their urologist or their GP and they’ll say, ‘I had my prostate cancer taken out three years ago and I was talking to my mate at golf and he suggested I get help but I’m not sure if it’s too late’.
“I tell them it’s never too late, although you will get better results if you do rehab in the first six months after radiation or surgery.
“When I first became a nurse practitioner, there was some resistance from doctors, but now we get a lot of support from urologists and GPs for the rehab service.”
Her clinic recently launched an online men’s health platform in conjunction with LTR Pharma, which provides telehealth consultations and access to drug treatments, including the erectile dysfunction nasal spray Spontan, which can now be prescribed online to eligible patients through the TGA’s early access scheme.
“We’ve got really thorough protocols approved by the urologists, but every person is different, and you need a thorough health assessment because sometimes ED can be telling you that you have heart disease, so it’s a warning sign,” she said.
“It’s a really nuanced area and people need specialist knowledge. Having said that, GPs do an amazing job when their time is so limited.”
Melissa said the newer technique being practised in Melbourne using a sural nerve removed from the patient’s leg to restore erectile function was also showing very good results.
“Guys need to know there are lots of options, but whatever you decide, you have to do rehab, whether it’s a sural graft or an implant, you have to think about it along the lines that if you were getting a hip replacement you’d go to the gym and get the exercises from the physio, and you have to do the same for the penis.”
ED: For more information about the support group PCaHELP go to www.pcahelp.org
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