As unwelcome news goes, a cancer diagnosis rates highly. But probably worse is being told, as I was, that it is advanced and incurable.
And then there was this: discovering my cancer could have been spotted earlier and, if it had been, potentially cured.
It all started shortly before my 69th birthday in the summer of 2020.
I had been spending my days gardening when I gradually became aware of a baffling soreness radiating around my right groin. I assumed I had given myself an injury from the physical work.
But when I described my symptoms to my GP, he was instantly worried and booked me in for a PSA blood test. This checks the amount of prostate-specific antigen – a protein produced by the prostate gland. High levels in the blood can indicate something is wrong with the gland – possibly cancer – or it may be caused by exercise or even sex.
My result was astronomically high. For a man of my age, anything over a score of 4.5 requires a referral to a cancer specialist. Mine was 76.3.
A biopsy and scans confirmed an advanced case of prostate cancer which had spread to my spine, pelvis, pubic bone and rib cage.
I struggled to make sense of it.
Nigel Burnham believes doctors missed the red flags
Sir Chris Hoy, pictured last week with his wife Sarra, was diagnosed with terminal prostate cancer last year aged 48
How could this have happened with absolutely no warning?
I asked my GP this, and he waved away my questions. He claimed that I had fallen victim to a ‘tiger’ version of prostate cancer – an aggressive form that develops so quickly nothing can be done to stop it. Initially I took him at his word. But when I did my own research, I realised that the soreness was not my first symptom.
In 2015 – five years before I was diagnosed – I developed erectile dysfunction.
I had never had this issue before and, according to the NHS, this is a symptom that merits a PSA test.
This is even more crucial for men with a family history of the disease and I had that too.
My father suffered with prostate problems in his final years and cancer was suspected – though he was too old to undergo invasive tests so was never diagnosed.
But I wasn’t offered one. Instead, my GP said it was likely down to my blood pressure medication and gave me Viagra.
In the following years, the erectile dysfunction remained a near-constant. In the end I accepted it as just something that happens to men my age and I was issued multiple repeat prescriptions for the erectile dysfunction medication by my surgery.
Not once was a PSA test suggested. It’s impossible to know what could have happened if I’d been offered one earlier, but I can’t help but wonder whether my cancer could have been cured – or at the very least prevented from spreading into the rest of my body.
The more I’ve researched into this topic, the more concerned I’ve become that GPs are failing to offer PSA tests – which cost the NHS just £20 each – to patients who need them.
More than 55,000 men are diagnosed with prostate cancer every year, and about 12,000 die from it.
I know one man whose GP talked him out of having a PSA test by saying it was unreliable and did more harm than good – the follow-up diagnostic tests can be intrusive and do come with risks. But soon after he was diagnosed with prostate cancer and died.
According to the NHS spending watchdog, the National Institute for Health and Care Excellence (NICE), PSA tests should ‘not be offered to asymptomatic men’, meaning those who do not show any signs of prostate cancer. This is because they are not considered accurate enough to diagnose cancer on their own. But the same guidance goes on: ‘Most men with prostate cancer are asymptomatic.’
Surely this confusion means thousands of men, like myself, are slipping through the cracks and going undiagnosed?
I’m not the only one concerned about this situation.
Last year, the NHS promised to review its advice on testing for prostate cancer in light of Olympic champion cyclist Sir Chris Hoy’s terminal diagnosis.
He was given the news at 48, having never been tested. Had he received a PSA test in the years leading up to his diagnosis, it’s possible he could have been cured.
But the NHS does not routinely offer PSA tests to men under 50 – again, unless they have symptoms.
Sir Chris – along with Prostate Cancer UK – are now calling for the age at which men are offered the test to be lowered to 45.
I recently asked a dozen or so men I know whether they’d had a PSA test. These were university-educated men in their 50s, 60s and 70s. But many had never even heard of it.
If that’s the case nationwide, then something must be urgently done to ensure GPs are offering the test to those who need it.
Of course, a PSA test is not the only way to diagnose prostate cancer. The NHS is exploring other methods, which include a spit test as well as offering all men above a certain age a prostate scan.
These are welcome and exciting steps. But in the meantime, thousands of men are missing out on this crucial test, which I know I should have been offered. What will it take for that to change?
