After an operation successfully got rid of his prostate cancer in 2012, Steve Ellis set about warning his eight brothers of their increased risk of the disease, encouraging them to get tested. He tells us about their mixed reactions and how three have now also been diagnosed.
I have eight brothers and, to date, four of us have been diagnosed with prostate cancer.
Since my own diagnosis four years ago, I’ve been volunteering with Prostate Cancer UK as an awareness speaker among other things. I find people are genuinely grateful to hear what I have to say and you feel like you’re doing some good.
But my biggest goal in life now is to ensure that all my brothers have their PSA tested regularly, so the chance of any of them dying of prostate cancer is reduced. To my surprise, though, not all of them have taken action. Yet.
To the best of my knowledge, our family history of the disease began in 1989, when my father was diagnosed with advanced prostate cancer. He died a year later, just a few days before his 73rd birthday. So prostate cancer had registered with me but I didn’t know anything about the disease – did anybody back then?
I was fortunate to have annual health screening provided by my employer, which meant that my PSA level was being monitored from age 50 onwards. An increase in my PSA level when I was 59 led to a biopsy that was inconclusive.
It was only after a third biopsy shortly after my 60th birthday that an aggressive cancer was detected. The biopsy resulted in an infection of my prostate, so it wasn’t a great time. I went from wanting to pass water constantly to not being able to do so, and I lost almost a stone in weight within a couple of weeks.
I knew there was every chance of a good recovery. I just wanted to get on with the treatment
I wasn’t surprised to be diagnosed and having read up on the subject previously, I knew there was every chance of a good recovery. I just wanted to get on with the treatment. It was much tougher for my partner, Sue, who was with me when I learned of my diagnosis and has been a tower of strength ever since.
I decided to have a prostatectomy and had the operation on 1 August 2012 – a date forever imprinted in my brain. The surgery went really well and it felt great knowing the cancer had gone. In fact, three days later, I started mowing the lawn, only for Sue to intervene and ban me from doing any gardening for the next few weeks!
I had regular blood tests – all of which were excellent – and in 2014, I was told that I only have a one per cent chance of a residual cancer.
My first priority after being given the all-clear was to tell my eight brothers of my diagnosis and urge them to request a PSA blood test for themselves. I waited until after my operation so I could reassure them that my treatment had been successful and that I was fine.
But perhaps my message was too reassuring as my younger brothers in particular didn't seem to feel any urgency to take action, which surprised me. One of the worrying things about prostate cancer is that if you have no symptoms, men can think: what's the problem?
Fortunately, one of my brothers – who’s a year older than me – took what I said very seriously. Since 1990, he had recurrent prostatitis and bladder and kidney infections, and was intermittently self-catheterising. When he learned of my successful operation, he asked his specialist if he could have his prostate removed too. His PSA was fine but a biopsy came back abnormal and he insisted on a second opinion when he was first refused surgery.
It's very unusual to remove what appeared to be a non-cancerous prostate, but the new urologist agreed on the grounds of pain relief and my brother had surgery at the end of 2014.
Months later, my brother discovered that his prostate had been cancerous after all. It’s still a mystery why nobody informed him earlier
In a chance conversation with his GP several months later about an unrelated degenerative disease, my brother discovered that his prostate had been cancerous after all. It’s still a mystery why nobody informed him earlier. Despite his health deteriorating in recent months, he never regrets having the prostatectomy and he’s clear of cancer.
Another brother also started going for regular PSA tests after learning of my diagnosis. It’s thanks to this that his prostate cancer was detected in 2014 when he was 66 years old. After seeking further guidance, including a helpful conversation with one of Prostate Cancer UK’s Specialist Nurses, my brother chose brachytherapy. He responded well to the treatment and his PSA score has now reduced significantly.
Most recently, a third brother was diagnosed – the identical twin of the brother who suffered from prostatitis. He had no symptoms and underwent six-monthly PSA tests, which came back normal, and his GP reassured him not to worry. Through his own research, my brother became aware of the high percentage of probability that he was already carrying the disease and was eventually contacted by the genetics research team at the Royal Marsden, where he was finally diagnosed. He has recently had brachytherapy treatment and remains hopeful of a positive outcome.
In terms of my goal of reducing the chances of my brothers dying from prostate cancer, then, it’s so far so good and all are still alive. Let's just hope our luck doesn't run out.
Steve, second from left on front row, in between his identical twin brothers, with his elder brother on the right, photographed in 1956. All have since been diagnosed with prostate cancer.