When Robin Stanton-Gleaves was diagnosed with prostate cancer at the age of 46, it was the potential impact of treatment on his sex life that he found the most traumatic. Robin talks very candidly about what he did to get erections back after prostate cancer surgery and how his experience inspired him to create a prostate roadshow to tell his mainly male workforce about the disease. Robin, a father of three boys, is founder and Group Managing Director of Balreed, a managed print service provider.
“Last year I had to be reinsured because my business is doing well and that meant I needed a health check, including a PSA test. It flagged that I had a higher than normal PSA for a man of 46, so I went to my GP who did a DRE (digital rectal examination) and thought it didn’t feel right. He sent me for more tests, which confirmed I had cancer across both sides of the prostate.
“I’d grown up with cancer in my family. My father died of lung cancer, my mother died of bowel cancer and I have uncles in their seventies who’ve got prostate cancer and are being monitored. So it wasn’t a word that necessarily scared me. But it was recommended that I have surgery and, as a younger man, the side effects of that did scare me. To hear that I was going to have to wear a nappy and learn how to wee again was worrying. But also, I have an active sex life and it was traumatic being told that part of my life might come to an end. It almost overtook the fact that I’d got a disease inside me that was killing me.
“I was thinking doom and gloom. However, I was lucky to have had a surgeon who was very good at saving the nerves in that area, which gives the best chance of rehabilitation. He said: ‘We’ll try to get your erections back and if not we’ve got things that can help.’ He told me I’d need to exercise my penis - to which I obviously said: ‘I love exercising it.’
I did eventually get erections and I was able to have sex.
“He introduced me to the vacuum pump, a cylinder that goes around the penis. You pump and it lifts the penis and makes it hard, while the pump is on. About two or three weeks after the operation he said that I should start doing it every day. And I’ve done that religiously. We call it dick gym.
“He also gave me Viagra and other bits and pieces. And through that combination and a penis ring, which helps keep it hard once the pump has finished, I did eventually get erections and I was able to have sex. It wasn’t the most romantic affair, when I used it the first time in bed. I had to say: ‘Let me sort this out and sort that out, bear with me. Have you fallen asleep yet?’ But I got there.
“I now get a natural erection without any pumps or Viagra.
“Before my operation it looked like the cancer was contained in prostate, but during surgery they found another small tumour. I still have it but it’s in an area where there’s no longer blood running through to feed it. Mentally it’s tough that it’s still there, but they’re monitoring it. They didn’t want to give me further side effects by treating it unless absolutely needed.
My friend said: 'You are carrying the burden of this illness alone. You have to start talking about it.’ He was quite right.
“I think I’m open about my prostate cancer now – other people say I’m very open – but when I was first diagnosed I didn’t tell anyone. I’d made myself feel I’d done something wrong in having it. Eventually I told a good friend over a drink and he said to me: ‘You’re someone who lives your life in the open. And here you are carrying the burden of this illness alone. That’s not natural for you. You have to start talking about it.’ He was quite right. It did lift the burden when I started talking about it and it put me in a much more positive place.
“When I told my colleagues and employees, I was very touched by the care they showed me. But when men started speaking about it, I realised they knew nothing about their prostate, where it is and what it does. I felt I’d been lucky to be diagnosed early and because I’ve got that little tumour, I know that it would have spread and that would have killed me. I wanted to give something back and share what I’ve learned. The obvious place to start was in my own business.
“So we did a sort of prostate roadshow over two weeks in January, taking awareness workshops to our five largest offices. Pretty much every single member of staff who could attend came along. We offered PSA testing alongside the workshops but we explained that it wasn’t a prostate cancer test – more an indicator of prostate health. And we didn’t ram it down people’s throats.
The younger guys were coming out saying: ‘I didn’t know that’, then going off to find out more on the internet.
“I was scared we would find someone with prostate cancer but we didn’t. It comes back to the point that the PSA test isn’t the be all and end all. We tested 100 men and if the statistic is 1 in 8 white men and 1 in 4 Black men will get prostate cancer, you’d think there would have been a few.
“But we didn’t do it to find people, we did it to educate them and it worked. The workshops really raised awareness and got people talking, especially the younger guys. They were coming out saying: ‘I didn’t know that’, then going off to find out more on the internet. I’m really proud of what we did.
“Before I was diagnosed, my awareness of prostate cancer and what the prostate did was zip. And I didn’t know there was a possible hereditary risk with prostate cancer. Having three sons, and knowing now that they are at higher risk, that scares the life out of me.
“I think the toughest part of this whole experience was sitting them down to tell them I had it. I actually thought they’d taken it well but I underestimated that because, after the operation, when I told them I had the all clear they collapsed in tears, as did I. I hadn’t realised what sort of burden they’d been carrying around. One of them just turned around and said, ‘Dad that means you’re not going to die then’.
“I’ve got in my head that when they’re 25, that’s the time to talk to them properly about their risk. I don’t want to worry them for the whole of their lives or stifle their lives. But equally, it’s clear there’s cancer in my family. So I’ll have to educate them and do the right thing by them.”
In this guest blog, Jim Peters, a veteran prostate cancer blogger, talks openly about his first experience of using injections to help him get an erection after prostate cancer surgery. Be prepared for graphic detail.