The Journey

Left in peril, the men told: You’re too young for a prostate test

Steve Kirkby knew all about the strong history of prostate cancer in his family. It had killed his 74-year-old paternal grandfather, and Steve’s father had been diagnosed with it at the age of 68. His father’s oncologist had said that Steve would need to be checked for the disease when he reached 40. ‘With my family history, I’d known for a long time that it was something I might have to face one day,’ says 44-year-old Steve, a married father of two from Ascot in Berkshire, who works in pharmaceutical healthcare sales. So in March 2011, soon after turning 40, he saw his GP to ask for a prostate specific antigen (PSA) test.

This simple blood test, which can be performed at the GP’s surgery, measures levels of PSA, a protein produced by the walnut-sized prostate gland. A raised PSA level can be a sign of prostate cancer. But the GP refused to give him the test. ‘He said I didn’t need it at my age and to come back when I was older, although he was a bit vague about when this should be,’ says Steve. ‘I was quite surprised. But you take your GP at their word and, if they say you don’t need the test, you accept it.’

Two years on, though, encouraged by his wife Helen, he summoned up the courage to return to the surgery. This time he saw another GP, who took a different view and gave him a PSA test. His levels turned out to be double what they should be for a man of his age. Subsequent tests confirmed Steve’s worst fears. At the age of 42, he was told he had prostate cancer. ‘It was a very upsetting time for us,’ he says now. ‘We have two young children, who were six and four at the time. And I felt frustrated with my original GP because I’d explained my family history and said that my father’s oncologist had recommended I get my PSA levels tested when I turned 40.’

Sadly, experiences like Steve’s are all too common. ‘Many GPs don’t appreciate that prostate cancer can be detected in men that young,’ says Marc Laniado, a consultant urologist at the Frimley Health NHS Foundation Trust and BMI Princess Margaret Hospital in Windsor. ‘And because we don’t have a national screening process or early detection programme, most men don’t undergo a PSA test on the NHS at all unless they specifically ask for it. Even then it’s only given from 50 onwards.’

A raised PSA is not necessarily a sign of prostate cancer. It can also result from a urinary infection, and having ejaculated within three days can also raise levels abnormally high because the prostate (which produces fluid for semen) has been active. ‘The test is far from perfect, but it’s the best initial test for prostate cancer we currently have available,’ says Mr Laniado.

More than 42,000 men in the UK have the disease diagnosed every year and 10,500 die from it. Men with a strong family history are at increased risk. ‘A man’s risk is three times greater if his brother had prostate cancer and about double if his father, grandfather, uncle or nephew had it,’ says Mr Laniado. 80% Proportion of men with prostate cancer who survive for at least ten years So why are doctors so reluctant to test for the disease in younger men, even when there is a strong family link?

When it comes to testing, GPs follow guidelines set out in the Prostate Cancer Risk Management Programme. Introduced in 2002, this states: ‘Any man over the age of 50 who asks for a PSA test after careful consideration of the implications should be given one.’ It doesn’t suggest that younger men should undergo the test, though.The charity Prostate Cancer UK believes this is wrong, and that younger men should be entitled to a PSA test if they have risk factors for the disease, such as a family history or being from a high-risk ethnic background (black African and Caribbean men have a one in four chance of developing prostate cancer).

‘Some GPs generally feel that if the patient doesn’t have symptoms and is below the age of 50, they would discourage them from having a PSA test because it’s not foolproof,’ says Ali Rooke, a senior specialist nurse at the charity. ‘But there’s no official guidance for younger men who are in high-risk groups.’ The charity wants men from the age of 45 who are at increased risk to be entitled to a PSA test, even if they have no symptoms, such as feeling unable to empty the bladder properly or needing to go to the loo more often and more urgently than normal.

While it’s true that most prostate cancer cases occur in older men, some younger men do develop it, without a strong family history. Jason Keener was diagnosed with prostate cancer at the age of 40. In 2011, he went to his GP after feeling tired and noticing that he needed to urinate more than usual. ‘A friend said to me as we had our lunch one day that it sounded as if I had diabetes,’ says Jason, 44, a lorry driver and father of two from Bishop’s Stortford, Hertfordshire. He was given a battery of blood tests, including a PSA test. ‘I thought nothing more about it until a week or so later when I got my results. They said I had a raised PSA level.’ A subsequent biopsy showed that he had cancer on one side of his prostate. ‘I couldn’t believe it at first,’ he says.

He had successful surgery to remove the cancer and, four years on, believes that the PSA test saved his life. ‘Apart from going to the toilet more often, I had no symptoms to suggest anything was wrong with my prostate,’ says Jason. ‘The test at the surgery flagged up that something was wrong.’

So should there be a national screening programme for prostate cancer? Professor Frank Chinegwundoh, a consultant urologist surgeon at London’s Barts Health NHS Trust and a member of the Department of Health Prostate Cancer Advisory Board, supports a national screening programme for all white men from the age of 50 and black men from the age of 45. ‘A quarter of all men we see presenting with prostate cancer have advanced cancer that has spread,’ he says. ‘If you had picked that up earlier, you could have treated it.’ But there are no plans to introduce such a screening programme for men of any age.

The UK National Screening Committee reviewed the evidence for a screening programme in 2010 and recommended against it, explains Dr Anne Mackie, director of the committee. The thinking is that it is far more common for a man to die with prostate cancer than from it – and, furthermore, the PSA test can give misleading results. There is no doubt that the PSA test is flawed. According to Prostate Cancer UK, 76 per cent of men with raised levels of PSA don’t have the disease. One problem is that men who have a naturally large prostate gland – or one that has expanded with age – produce more PSA. And those with a small prostate will produce less PSA, so they could be wrongly reassured by low PSA test results. Indeed, one man in 50 with fast-growing prostate cancer has a normal PSA level. And because it is hard to distinguish between the aggressive and non-aggressive cancers, some men will undergo unnecessary surgery or radiotherapy.

I realise how lucky I’ve been… Things could have turned out very differently if I hadn’t insisted on the PSA test. Yet Mr Laniado says there are now other ways to verify PSA results, so GPs should be less wary of giving the test. These include tools such as a risk calculator that takes into account factors including age, ethnicity and family history in combination with the PSA test result.

Even if the PSA levels come back as low, further investigation may still be carried out if there is a strong family history of the disease. After having a PSA test, a patient also usually undergoes a digital rectal examination. The gland should feel smooth – if it feels rough, hard or enlarged, this can be a sign of cancer.

Richard Hindley, a consultant urologist at the Basingstoke and North Hampshire Hospital NHS Trust, supports PSA testing for men with a family history of prostate cancer ‘at 40, if not 35 or possibly even younger’. He says an early test can act as ‘a good marker in the sand’ – and not solely for those at higher risk. ‘As we get older, especially from our 60s onwards, we know that the prostate gland will get larger and so produce a higher concentration of PSA. So if you do it when men are younger, you get a better idea of how much it has changed.’

When Mr Hindley himself turned 45 recently, he had his own PSA ‘baseline’ checked so it could be used for future reference. Within three weeks of receiving his raised test results, Steve Kirkby was referred to hospital and underwent a biopsy, which suggested that he had a slow-growing cancer. ‘I was shocked to be told I had cancer at such a relatively young age,’ he says. ‘But my consultant said it wasn’t life-threatening and that various treatment options were open to me.’ As the cancer was contained in the gland itself, Steve initially underwent ‘active surveillance’ – which meant he had a PSA test every three months. However, another biopsy a year later showed that in one area of the prostate, the cancer had the potential to become more aggressive. This summer, Steve underwent HIFU (High Intensity Focused Ultrasound), where ultrasound is used to destroy the cancer cells – it is more precise and so less damaging to healthy tissue than conventional radiotherapy (although its longterm benefits are not clear). He has since had another MRI scan, which showed no further signs of cancer. He will keep having regular PSA tests. ‘I realise how lucky I’ve been,’ he says. ‘Things could have turned out very differently if I hadn’t insisted on the PSA test.’

By Adrian Monti For

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