Over treating men

I think a lot of the problem is the limitations of the PSA tests (and for that matter scans). There is a grey area where values are above typical "normal" limits, but that might be due to lifestyle factors or even just random fluctuation. The article seemed to suggest that the more useful information would be evidence of how fast any tumour is growing - and of course repeating the test at regular intervals, AS in other words, is what is needed to get that.

My guess is that the analysis used data from surgery biopsies - which is not information that can possibly be known when deciding whether the patient needs treating.

Ultimately though I have to agree with the study at one level. All PC treatment has side effects, even if for the lucky ones that is limited in duration, and those are avoided with AS. At worst it gives the patient a number of years of side effect-free life before treatment is finally needed.

There doesn't seem to be a "better" PSA test on the horizon. More frequent testing might help with sorting out problems of random fluctuation, but to get a cancer growth estimate it would still need testing over multiple months. I don't know where the technology is with scans - except that the most modern equipment is only available in a few hospitals - but historically with a diagnosis at the level AS is a feasible outcome they weren't up to showing definitively that a cancer is within the prostate capsule, which is the information you would ideally want to know when opting for AS.

I don't accept that all men offered AS who chose active treatment should be regarded as over-treated.

We know from post-prostatectomy pathology that 40% of diagnosis are wrongly graded, mostly under-diagnosed in terms of Gleason and/or staging. Many men who are offered AS but chose prostatectomy are found to have been unsuitable for AS from their pathology report. The same will be true for those who chose radiotherapy, but of course we'll never know which they are in that case.

At an NIHR webinar recently, I raised the issue of the poor accuracy of diagnosis and the resulting risk associated with AS. I was expecting some push back, but not at all - they agreed and said they know 30% of men on AS are not in fact eligible for AS because they've been under diagnosed.

So you cannot say that in a cohort of men offered AS where we know 30% have been sufficiently under-diagnosed as to be unsuitable for AS (but we don't know which that 30% are), that all those who chose active treatment instead were over-treated. It really has to be up to each man to decide on the basis of their own attitude to risk, if they accept the offer of AS, and to be informed that it does come with an associated risk (which is usually not explained).

Another pressure for AS comes from meeting the 62 day target to start treatment from GP referral. If the patient has only been presented with options on, say, day 61 and wants to think about it, there was a tendency to put them on AS to meet the target, and then they might change their mind a couple of weeks later when they've read up and given it some thought. NHS England are now saying any man who is on AS for less than 6 months will be treated from the targets perspective as never having been on AS, and counted as a missed target if they come off AS after day 62. This may change behaviours, not necessarily speeding up diagnosis as it should do, but possibly hospitals encouraging men on AS to stick it out for at least 6 months, so that's something to watch for. (Actually, I think it's a bit silly that the targets include patient choice decision time, but most cancers don't have choices to be made and the targets aren't prostate cancer specific.)

Edited by member 17 Aug 2025 at 23:06  | Reason: Not specified

What you say makes great sense, Dave, and is reviewed here:

https://www.explorationpub.com/Journals/etat/Article/1002259

Accurate identification of prostate cancer Gleason grade group remains an important component of the initial management of clinically localized disease. However, Gleason score upgrading (GSU) from biopsy to radical prostatectomy can occur in up to a third of patients treated with surgery. Concern for disease undergrading remains a source of diagnostic uncertainty, contributing to both over-treatment of low-risk disease as well as under-treatment of higher-risk prostate cancer. 

It seems to me that the initial biopsy results are crucial to to successful treatment and management of the disease. Yet we are relying on results that are inaccurate in over 30% of cases. You'd have thought, that in this day and age, you'd expect a far more reliable base to start from.

Research in the UK suggests that nearly 40% of post op Gleason scores are inaccurate.

https://bmcurol.biomedcentral.com/articles/10.1186/s12894-019-0526-9

Absolute concordance between initial biopsy and pathological Gleason grade was 58.9% (n = 10,364), whilst upgrade and downgrade rates were 25.5% (n = 4489) and 15.6% (n = 2745) respectively.

Is this level of biopsy inaccuracy confined to prostate cancer or does it apply to most other cancers?

Edited by member 18 Aug 2025 at 08:05  | Reason: Add link

Not so sure about that Andy.  Wouldn't inaccurate diagnosis, leading to unnecessary radical treatment and the risk of life changing side effects, be critical to most men?

Edited by member 18 Aug 2025 at 08:28  | Reason: Typo

I suspect all of us agree that  better diagnostics is key, particularly if we can say with complete confidence that the cancer is Gleason 6, and ideally to do that using just scans/blood tests and no biopsy.

Diagnostics have improved greatly – e.g. MRI plus targeted biopsy is much better than random biopsy, and PSMA PET scans are better than traditional bone scans for assessing spread.

One problem is that all the traditional markers, such as PSA, Gleason, Cribriform, PNI,etc, are really just statistical predictors. They can say that on the basis of past observations of cells with this collection of characteristics, there is an X% chance of spread within Y years. But they cannot say what will happen to any individual cancer or when it will happen. According to Dr Scholz even high grade cancers can take many years to metastasise and may not even always do so.

What this means is that simply improving the identification of the classical indicators, while it is great, may still not be enough. There is evidence that a majority of men (maybe all?!) develop prostate cancer at some stage but most die without ever knowing that they have it. But suppose that better diagnostics and more widespread screening meant that most of them did know about it ?  It would not be ideal to end up in a situation where a greatly increased proportion of men are being told, at around say 50-60 years old, that they have microscopic beginnings of PC which may or may not become problematic in the future but we don’t know when. That would definitely lead to a big increase in anxiety and overtreatment.

What I dream about is that some time in the future, maybe with the help of AI, we will be able to dispense with things like PSA and Gleason score, and that future tests and scans will be able to assess the detailed biological/genetic characteristics of each man’s cancer and tell him whether it is going to cause any problems or need to be addressed over say the next 5 years. It may be a pipe dream for now but I don’t think it is impossible.

The inaccurate diagnosis is almost all under-diagnosis, not over-diagnosis. This leads to under-treatment, and hence treatment failure.

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 12:52  | 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 15:54  | 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.