Over treating men

Thanks for posting the genetics video Adrian. I had not seen that before - it backs up Dr Scholz's view that there can be tigers and kittens even among Gleason 8 cancers. So I shall dream on !

On the issue of AS and undertreatment, I agree with your view on AS.

I think the question of undertreatment can be looked at in different ways. From one point of view if it is discovered that there has been an error in the original classification ( e.g. a 3+3 should have been a 3+4) such that more treatment would have been offered if the original diagnosis had been correct, then that could be defined as undertreatment. On the other hand , we could choose to define undertreatment as a failure to offer treatment that, in the event, made a material difference to the outcome (e.g. in terms of worse quality of life or metastasis or death).

In one of his videos Dr Scholz says that only a small percentage (perhaps as low as 5-10%) of Gleason 3+4 cancers metastasise within ten years of diagnosis if left untreated. If something like this is true it means that some of the men who have been misclassified as 3+3 may end up having treatment after say 5 years when the error is discovered, but that this makes no difference to their final outcomes. In some cases it could even be argued that they end up with the best of all worlds since they not  only get the extra 5 years of life without treatment, but also perhaps get treated using more advanced techniques than were available when they were first diagnosed. This may help to explain why the statistics on AS outcomes are so good despite the many inaccuracies of diagnosis, which of course we would all like to see improved.

I sometimes have a similar view of my own experience. I could never have been offered AS but I often berate myself for not having gone to be screened years earlier, as I had obviously had the cancer for years before it was diagnosed.  But, though it is still early days in PC terms, the longer I remain with an undetectable PSA the more I start to wonder whether I have  in practice been lucky and may end up being better off than I would have been if I had gone to be screened 5 years earlier. That does not, of course, mean that I made the right decision because objectively I should clearly have got checked earlier and then I would have been treated at a significantly younger age. But that brings me back to my dream of a day when it will be possible to give men high quality advice on both the optimal treatment and its timing.

Edited by member 19 Aug 2025 at 13:52  | Reason: Not specified

Hi Paul.

When I was diagnosed in 2020, NICE deemed that T2c disease was not suitable for AS

 About a year later their guidelines changed and they used CPG which catergorised T2a, T2b and T2c, in one group T2. The old T2c as the 'new' T2, was then suddenly deemed suitable for AS.

I wrote to NICE to explain this change of goalposts for T2c disease. Amongst the waffle in their reply they mentioned it was to prevent overtreatment.

All details including their full reply to me are in this conversation.

https://community.prostatecanceruk.org/posts/t29997-T2c-disease-and-active-surveillance

Although I'm in favour of AS, this change of guidance to T2c disease still perplexes me.

Edited by member 19 Aug 2025 at 16:54  | Reason: Additional text

I phoned up to book my regular PSA checkup. I got the feeling that I wasn't welcome. When I explained it was a follow up, post treatment everything was fine.

I got the impression they were fed up of men trying to get a PSA test.

My opinion is there are more men being under diagnosed or diagnosed to late for a cure rather than over treated, and the ones like me that are diagnosed with low grade (3+3) are fobbed off with AS when a more suitable treatment with less side effects could be given earlier. If I was told on day one whilst only a grade 6 it was a T2c cancer I would have opted for treatment strait away rather than have to wait ten months. I am all for the patient making a decision because of the potential side effects of each treatment, but you can only make what is a clinical decision if you have the true facts, not just the bits they want to tell you because they are scared you will over react. Like I said I my earlier post, you should not be getting this kind of news over the phone from nurse reading from some scribbled notes with your name on it.

Bob, AS means Actuve Surveillance.  A regime of regular testing rather than removal of the prostate.