Every year over 3,400 men are diagnosed with prostate cancer. Two survivors want to break the silence about side effects such as erectile dysfunction and incontinence, says
TWO men, who have both been diagnosed with an aggressive form of prostate cancer, want the men of Ireland to start talking.
“Prostate cancer is potentially a silent killer — most of the damage is done under the hood,” says John Wall, an air traffic controller at Shannon Airport, who was diagnosed with “the most aggressive type of prostate cancer you can get” at age 46.
“My PSA was elevated but I wasn’t too concerned. I thought I was too young for anything other than prostatitis [prostate gland inflammation that often gets better in time].”
Every year in Ireland, over 3,400 men are diagnosed with prostate cancer. It’s the second most common cancer in men — one in eight will be diagnosed with it during their lifetime. And there’s no national screening programme.
“Men service their cars meticulously but with their own bodies they wait until something goes wrong. They should be going every year to their GP to take a full blood count,” says Wall.
Co Wicklow-based dad of two Raymond Poole, 56, was diagnosed in August 2017 after a year of rising PSA levels. He underwent radical prostatectomy using robotic surgery — this removes prostate gland, some surrounding tissue and lymph nodes. Poole, a senior project manager, says people often see prostate cancer like ‘man-flu’.
When people hear ‘cancer’, they’re very sympathetic. Then they hear prostate cancer and it’s like ‘oh that’s not real cancer’. They don’t comprehend how severe it can be.
Prior to surgery, Poole was told he’d be left with permanent erectile dysfunction, as well as incontinence that might heal itself — usually, after 18 months medics know if it will rectify. Married to Selena, he’s upfront about the treatment’s impact. “That I wouldn’t be able to have children didn’t bother me — I have two children and four grandchildren.
“But personally, for Selena and me, erectile dysfunction changes the intimacy in your relationship. You’re still in love but things have changed and you have to rediscover how to make that relationship close again and that’s a big journey.”
Explaining that patients are given two options if they want a physical relationship — an injection or a pump – he says: “Imagine how that takes the spontaneity away from any physical relationship.”
The incontinence meant Poole had to wear full pull-up nappies for three months post-surgery. In a job where he gives a lot of training — frequently standing up to give talks at meetings — he’s always mindful of where the bathroom is. But some bathrooms leave a lot to be desired and that exacts a high toll mentally.
“In order to change and get the pull-up off you have to strip down. You wouldn’t believe how unhygienic some men can be — you’re standing in you-know-what and you have to have this little nappy sack. That affects you mentally.”
Poole’s outspoken about how male incontinence is never spoken about, yet when it’s a woman’s problem it’s the subject of ad campaigns. Since his surgery, he has worn all different levels of incontinence pads.
“To this day I still wear them. You see ads for incontinence pads for women — and there’s never one man in those ads, no man saying ‘I suffer from incontinence and it’s ok lads, you get through it’. There’s too much quietness about it all.”
Like Poole, Wall is upfront about the difficult-to-talk-about stuff. “I’m living with terminal cancer,” says the man whose journey to treatment began when a GP locum raised a red flag in July 2017 after another elevated PSA level.
“Within two and a half hours I was in Galway having a scan. The combination of my previous blood results and the symptoms I was having pointed to a potential problem. Every surgeon I saw, bar one, said yes, I could get chemo but that was all — I should get my affairs in order.”
The first urologist he’d met in Galway had predicted that “no one would touch him in this country’ — his cancer was too far advanced.
“He said if I wanted surgery I’d have to go abroad and that’s what happened.”
Wall went to Belgium, to a Centre of Excellence for urology in Leuven. In order to qualify for surgery, his lymph nodes post-chemotherapy had to reduce in size. Scans were couriered to Leuven and surgery was deemed possible.
The surgeon and I had a 40-minute chat. Then he left the room, a nurse came in and asked if I was ready. For what, I asked. Surgery, she said.
It was a significant operation — 15 hours on the table — radical open prostatectomy and 61 of his lymph nodes removed. “Their aim was to throw the kitchen sink at it and remove as much as they could. So they did.”
He describes his quality of life since as remarkable. “What’s been huge in my progress is my ability to manage my own time. My employer has been absolutely amazing in this regard. From day one, this has allowed me and my family get through this. To be able to manage one’s own time is half the battle, physically and mentally,” says Wall, who’s married to Deirdre and father to Ronan, 19, Lauren, 16, and Maeve, 12.
Prostate cancer generally causes symptoms only when it has grown large enough to disturb the bladder or press on the tube that drains urine. Symptoms can include slow flow of urine, trouble starting/stopping flow, more frequent urination, pain when urinating, blood in urine or feeling you haven’t fully emptied bladder. Such symptoms aren’t always due to cancer but it’s important to visit the GP if they’re occurring.
While prostate cancer survival rates have increased dramatically in the last 20 years, Wall has not been so lucky. All they can do, he says, is prolong his life.
“The cancer will return and when it does, it will be problematic. There’s nothing I can do about it. Even though it’s going to take me, I’m still living, I’m still me. I grew up with the ‘big C’ — it wasn’t talked about — but cancer is just another thing you’re dealing with in your body, in your life. And it’s possible to live with a terminal diagnosis and to live very well.”
He doesn’t do bucket lists (“now I enjoy every moment, the simple things I took for granted”), but there’s something he wants to see through. Earlier this summer he went public about his medical card being twice revoked since his diagnosis. “I just wanted clarity as to why the medical card was taken off me.”
Wall found the review of his medical card — where he had to continually confirm his diagnosis — to be mentally problematic at a very tough time. “There has to be a humane way of dealing with the terminally ill so that people can regain faith in the medical card system.” The ombudsman upheld Wall’s complaint about the governance of the medical card system and he has a meeting upcoming with Health Minister Simon Harris.
“The medical card system needs urgent review and I want to be part of that, not for me but for the thousands out there struggling who don’t have all the support I have.”
Like Wall, Poole too has transcended his diagnosis and wants to have a positive influence arising out of his prostate cancer experience.
His book, There’s Nothing So Bad That It Couldn’t Be Worse, is published this autumn.
It is, he says about “more than just prostate cancer — it is about one’s mental health and the struggles we encounter when faced with such a challenge”.
- All profits from book sales will go to UNICEF Ireland.
- Visit ifiweretom.ca, an interactive Canadian website to support men with prostate cancer. Also cancer.ie/cancer-information/prostate-cancer.