Hello,
I am aged 65. I have recently been diagnosed with T3b prostate cancer. I am trying to come to terms with the diagnosis. One of the things I find myself going over and over again is that I had been having PSA tests every four years, so how has this happened to me?
In April 2018 my PSA was 0.86, well below the threshold of 3.5 for men in their 50s (according to NICE's guideline NG12). In March 2022 my PSA was 3.34. It was below the NG12 threshold of 4.5 for men in their 60s - I was nearly 61, so my GP informed me that my test was "normal". In April 2026 my PSA was 14.7, clearly not 'normal'. I am Gleason 3+4=7 (30% grade 4), so the tumour has been relatively slow growing, but has now escaped the prostate into one of my seminal vesicles. I decided against high risk RALP surgery when I was informed that there was a 75% chance that I would need radiotherapy (plus probably hormone therapy) within two years. I am now on hormones and will start external beam radiotherapy soon (possibly with a HDR brachytherapy boost).
The point is, in 2022, had my GP considered 'velocity' (the rate of increase in my PSA from my previous test in 2018), they would have seen that it had almost quadrupled in four years, an alarming rate of increase which would have led to further investigations and diagnosis in 2022. It is likely that I would have been able to have a more straightforward operation and that probably would have been that. I understand that GPs are only required to consider the actual PSA score against the age-related threshold scores. I further understand that some GPs do consider velocity as a matter of good practice. Mine did not.
I want to campaign for a change in NICE's NG12 to require GPs to consider velocity. I am confident that the relevant computer software used to show test results could be adapted to make it very easy for GPs to check velocity (probably in a matter of seconds). I know that this would result in more 'positive' test results requiring more MRIs, and that this would have resource implications in needing more MRI scanners and more people to interpret the results, but surely it would save money overall. Perhaps it would costs relatively small amounts (perhaps a few hundred pounds), but that pales into insignificance compared to the likely tens of thousands of pounds that the HNS will end up spending in treating me. And that ignores the obvious unnecessary human 'cost' to men like me and their families.
So (sorry for the very long intro!), I would like to start gathering evidence to support campaigning. Are their any men who are / were in my situation, that could have got an earlier diagnosis (and easier and more effective treatment) had their GP been required to consider the rate of increase in PSA from the previous test? Are any such men willing to share their experiences with me?
Thank you.
Bill