At 53 I was diagnosed with incurable prostate cancer – I wish I’d been tested sooner

Politicians gathered to discuss prostate cancer screening last week. Although it’s too late for me, it can save many men’s lives

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I’d only ever had two days off sick, and that was in my 20s. When the company I worked for invited me to a routine executive health check, I was a regular park runner and not a smoker. We had an occupational health doctor on staff who designed the check, and he included a PSA (prostate-specific antigen) blood test which is a test that can help diagnose prostate problems, including prostate cancer.
I was 53 years old at the time. They measure your height and weight, take a range of blood tests, and then you have an appointment with the doctor. I was expecting the usual lecture: “You’re a little overweight, and how many units are you drinking?” But instead he said: “Ooh, your PSA is a little high. You need to call your GP.” I told him I would do it after an upcoming trip to India. He literally pushed the phone across the desk and said: “No, you need to call your GP right now.” My PSA was 27 – it should have been around three. If your PSA is above three, investigate. My brother’s, for comparison, is 0.62.
I got a very quick appointment and my GP referred me straight to a urologist. He repeated the test and that allowed me to think maybe there was a problem with the first test. I wasn’t even doing any of my own investigations at this point – I was fit and well, I had no symptoms. The PSA gave a similar number, and he undertook an MRI scan. When the scan came back, he said: “There’s something going on; we need to investigate with a biopsy.” The magic word: biopsy. It was only at that point that I told my wife.
When I went for the biopsy, there were three people present: a doctor and two nurses. I wondered why there were so many people in such a small room. Then I realised the second nurse was there to hold my hand. That biopsy was a transrectal biopsy, which is very unpleasant and has a high risk of infection. I walked away with a lot of antibiotics. The test involved 12 needles, each with a hollow core, to take a sample from the gland, which is around the size of a walnut. I remember the next day I was off to Amsterdam, but I couldn’t drink any beer for a while after the procedure – a tragedy. The good news is they are phasing out that kind of biopsy as MRI scans are now standard procedure.
By now I had started Googling and downloaded a lot of documents. My wife came along with me to the appointment for the results (nine years ago exactly) and we were both aware there was something serious going on.
The doctor was now able to see if there was cancer and how aggressive the cancer was. There is a grading system, the Gleason Grading System, which runs from six to 10. I had a grade nine. Words were used such as “high risk” and “aggressive.” If you have a lower Gleason score, then the question is how fast it is growing and when it will leave the prostate, go into the rest of your body, and cause damage that could end up killing you.
So the treatment calculation is based on how long you could have left on earth before the cancer could kill you. My father died at 89, and my mother is still going strong at 94 so there’s potentially a lot more life in me, and radical treatment was needed. For other men with a lower grade, it’s questionable whether the cancer should be treated at all.
I was faced with a really complex choice which was to remove the prostate or use radiation on the area. You see a surgeon and an oncologist. But in my opinion, you have to talk to men who’ve undergone both treatments because the decision is really about side effects and what happens afterwards. I started to attend my local support group, which was really helpful. I met men who’d experienced both options.
I looked at the statistics. With both treatments, there is a risk of urinary incontinence. There’s a slightly higher chance after surgery, but there is something that can be done about it: an artificial sphincter can be fitted that will dry you up. The other risk is sexual dysfunction – some surgeons manage a fantastic job of preserving the nerves that allow you to have an erection, but it’s difficult. Still, there are things that can be done such as injections into the penis that will give you an erection.
There are many solutions to side effects but they require men to put their hands up and ask, and often they don’t – there is a lot of shame. I know men who hide their incontinence pads from their partners, but I never felt any shame; it’s not on me that I have this disease.
I opted for surgery because it’s a single visit as opposed to multiple radiotherapy visits. I thought, “Cut it out.” There’s something very male about that desire to cut it out. The intention at that time was to cure. I said to my consultant: “At least we caught it early.” He said: “I wish we’d seen you a year earlier.”
After the operation, there were more PSA tests. These are carried out after both surgery and radiotherapy for five years, and before every test, there is anxiety: is it up or is it down?
If even a single cancer cell has escaped, it can return and after the operation, I still had a PSA number. That meant they didn’t get it all. I then had radiotherapy, accompanied by hormone treatment. It’s a form of chemical castration – they take away testosterone because that’s what signals the prostate cancer cells to grow.
Hormone treatment has side effects and one of them is loss of libido. You don’t really notice it, but your partner does, so this needs to be a couple’s choice. Loss of testosterone can involve muscle wastage, which needs to be counteracted with exercise and, as with the menopause, it can cause osteoporosis.
After that, there followed two years of hormone treatment. When I came off that, my PSA number started to rise again. A scan showed I had eight small ‘pieces’ of cancer, and I needed systemic treatment, more hormone therapy. This held it for a while, but the cancer is smart, and eventually, it grew without the testosterone.
I’m now being treated with chemotherapy. This is now about overall survival rather than cure.
My father suffered depression in his last years, and I’ve really taken measures to look after my mental health. I’ve found lots of ways to cope. I set up an online support group called Living Well with Advanced Prostate Cancer. I know guys who meet in the street and say, “Aren’t you dead yet?”
I do meditation and practice mindfulness. Before my latest PSA test, I get the colouring book and felt-tip pens out. It’s a great mindfulness exercise. The other big one is exercise. I go to the gym every day.
It’s important to come to terms with death and overcome the fear – talk about it openly and honestly. I also find meaning and purpose: staying alive for my family, coaching and guiding others with the condition, and being an advocate. I practise Stoic philosophy which involves understanding what we can and cannot control.
Last week I spoke at the prostate screening event in the Houses of Parliament to give a voice to all those whose lives are impacted by a prostate cancer diagnosis that came too late. If I’d been tested earlier, my life would have been so different. There’s a lovely picture of me the month before my first PSA test on holiday in Paris with not a care in the world. Men need to understand they are walking through a minefield. Get a mine detector out – if it beeps, it might not be a mine; it might be an old tin can, but you need to know. I’d like to see everyone given a mine detector.
As told to Phil Hilton
The debate about screening for prostate cancer rests on the accuracy of the available tests, the availability of reliable treatments and the risks of costly or distressing over-treatment versus the benefits of early detection.
There is no current population-wide prostate screening programme. The UK National Screening Committee says there is no test accurate enough and no treatment that is specifically better for patients with early detection. It highlights the risks of over treatment. The last review was carried out in 2020.
Health Secretary Wes Streeting has asked the NHS for a fresh review of prostate screening for younger men in the wake of Sir Chris Hoy’s cancer diagnosis.
Prostate Cancer Research released a report last week that said introducing a five-year screening programme for high-risk groups (45-69) would result in a positive impact of £54 million and if new screening tests were used and extended to the wider population (50-69) there would be a £204 million benefit. The introduction of a targeted screening programme for high-risk groups using the current clinical pathway would result in close to 4,000 potentially life-saving early diagnoses annually, it claims.
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