"My GP wouldn’t give me a PSA test. Three months later I was diagnosed with advanced disease"

Kevin’s father died from prostate cancer, so he knew a little bit about it and remembered his father complaining about pain in his joints as the cancer advanced. So when Kevin started getting back pain at the age of 53, it started alarm bells ringing and he asked his GP for a PSA test.

The GP told him that the PSA test wasn’t a reliable prostate cancer test and talked him out of having it. Instead, they prescribed him some painkillers.

Kevin worked in IT, and some days the pain was so bad that he couldn’t sit at his desk. He had to take a hot water bottle to work with him to help alleviate the pain, lost weight and muscle tone, and less than two weeks later went back to the GP. This time, he was referred to a chiropractor.

Rogue practice meant a pointless referral

Kevin’s wife, Sue, had also been to the doctor about something unrelated. She asked the GP why they’d refused Kevin a PSA test and was told in no uncertain terms that their practice had made a decision not to engage with the Public Health England’s Prostate Cancer Risk Management Programme (the PCRMP). This says that every man over the age of 50 has the right to a PSA test after a discussion of the pros and cons with a doctor.

Meanwhile, the chiropractor that Kevin’s GP had referred him to told him that his body wasn’t responding the way they’d expect from the tests they were doing, which suggested that what Kevin was experiencing wasn’t the normal sort of back pain. Kevin mentioned his worries about prostate cancer again and the chiropractor recommended he go back to his GP.

Second opinion came too late for terminal diagnosis

This time, Kevin saw a different GP from the same practice and was finally given a PSA test. The result came back. Kevin’s PSA level was 92.

Not long after his first appointment with the urologist, Kevin was diagnosed with advanced metastatic prostate cancer. It had spread to his hips, pelvis and spine, and could be controlled but not cured.

Kevin didn’t know that he could talk to his doctor about the PSA test from the age of 50, or that he was at higher than average risk of prostate cancer because of his family history. He feels very strongly that if he’d known three years ago what he knows today, his cancer would have been detected and he wouldn’t now be facing the end of his life. (A fact that his urologist confirmed when Sue asked if being tested earlier might have made a difference.)

He launched an online petition to call for improved prostate cancer testing and within weeks had a huge level of support. We are incredibly impressed by Kevin’s efforts. His achievements are truly remarkable. We don’t agree on everything – for example, we won’t be calling for whole population prostate cancer screening until the technology improves to the extent where this could save lives without causing undue harm – but we do agree that things need to change.

We are launching guidelines today which will help GPs use the PSA test to detect prostate cancer earlier, including for higher risk men such as Kevin. And we have lots more work going on to make sure men like Kevin have a different experience in future. Find out how we’re working to improve diagnosis here.