At Prostate Cancer UK we recently stuck our head above the parapet and published guidance to help GPs and practice nurses to improve the early detection of prostate cancer in men without symptoms. This disease kills over 10,000 men a year in the UK and I'm afraid that number is set to rise. As always, if you dare to put your head up, you can get it shot at. Some commentators felt that we were encouraging the diagnosis of slow-growing cancers that would not have shortened a man's life, and some even said that a charity shouldn't be doing this kind of work.
So why did we take action on a sensitive issue like this? Let me explain the background.
The official Public Health England guidance on the use of the PSA test - used to try to pick up prostate cancer - was re-issued at the same time as our work. The PSA test is notoriously inaccurate, which is the reason Prostate Cancer UK remains opposed to population-wide screening until there's actually a better test to screen with. Nobody wants thousands of men to get damaging side effects of treatment that they never needed in the first place!
So why not just go with the official guidance? After all, it is based on clinical trials and published evidence. But the evidence is limited and leaves big gaps where GPs are left to make up their own minds what to do. A couple of examples: there is nothing about how often to re-test a man with a 'normal' PSA value, or about when to stop testing. There is nothing about what to do for men at higher risk (if they have a family history of the disease or if they're black). These gaps create differences in the way that GPs are using the PSA test now, which means some men lose out on the opportunity of early prostate cancer detection.
We've been aware of the gaps in the published evidence but we didn't want to just sit back and wait for years for something better to come along. So we decided to develop a clinical consensus on how to use the PSA test more effectively. We opted for the Delphi survey technique, used by health scientists and bodies like NICE to steer decisions when there's limited research or a lack of clarity. We got over 300 health professionals - consultants, nurses and 49% were GPs - to give us their views on draft statements using existing international guidelines. We went round this loop three times to get to a consensus, and then a group of experts, with an independent chair, refined and agreed the final wording of the statements. http://prostatecanceruk.org/PSAconsensus.
In an ideal world, it wouldn't be down to a charity to answer these tricky questions about how to improve early detection of prostate cancer whilst avoiding over-treatment. But there has been a scandalous lack of investment in research to solve this problem. So for us, this is only the start. We're also taking the lead in funding longer term research to put a risk prediction tool into the hands of GPs across the UK. This is the tool that doctors and patients alike have been crying out for - something to identify men at high risk of aggressive prostate cancer. Something to improve diagnosis and really help to target testing and treatment. We hope that GPs across the UK will be using this new tool within the next three to five years. But in the meantime tens of thousands more men will develop aggressive prostate cancer. And many will die.
I know this is a contentious area. Lots of doctors don't like using the PSA test because it's unreliable and can lead to over-diagnosis and over treatment. But at present it is the best thing men have got. And our clinical consensus will help GPs to use it more effectively.
Yes, Prostate Cancer UK has an agenda - we are unashamedly here for men who have, or might develop, prostate cancer, and for their families. And our agenda includes trying to redress the past inertia that means prostate cancer is repeatedly side-lined and ignored. Men need clarity over when and why they should be tested, and we are proud to have facilitated this work to help frontline clinicians reduce the number of men who are diagnosed too late.