Over treating men

User

Posted 12 Aug 2025 at 17:58

Just seen a piece on the BBC about men being over treated for PCa.

It revolves around men opting for surgery rather than AS when it would be appropriate for them.

I can see the logic of holding off radical treatment to save the side effects of surgery for a few years.

But I also see more to the counter argument I.e. that it's the man's choice as to whether he opts for surgery and so this decision is informed by what he is told by his doctors and also what he learns from others.

Many men do not trust the NHS to be open and honest with them about treatment options. Financial considerations seem to be a part of what they advise which definitely feels wrong.

The test result's are also very often found to be considerably less accurate than would be ideal, and cancers thought to be suitable for AS are far more aggressive or widespread than the initial tests indicated.

Is a man going to take the risk of leaving his prostate in place knowing there is a strong possibility that the doctors could be trying to save money or that the tests could have under estimated his risk.

It seems that the huge uptick in prostate cancer testing has left everyone struggling to keep up with the need for services.

Should it be the men who find themselves with a cancer diagnosis to be asked to put their treatment on hold for the NHS being ill prepared?

If things were made clearer so a decision could be made properly and with full disclosure I'm sure things would improve for AS uptake.

But the disjointed way the NHS is run and the way some departments work I don't think it's capable of helping to achieve the aim of encouraging more men to take on AS.

User

Posted 13 Aug 2025 at 08:23

Very interesting article Adi.

It's obvious that we are not the only country struggling with PCa treatment options.

The key is that active surveillance needs to be a carefully managed process in order to a. Make a man confident that it's a safe path to follow and b. Catch any change in the prostate before it becomes a much larger problem.

The truth is, based on my experience of my local hospital, the NHS just do not have the basic ability to get things right. Sitting in the wrong waiting area for hours without anyone checking on you, failing to inform departments of a patients arrival, failing to get letters out until after the date of an appointment.

This is nothing to do with funding or low wages, it's basic poor service. If the NHS were a business it would have to haul it's socks up drastically to avoid customers voting with their feet.

The NHS doubtless does some amazing things, has some wonderful staff and improves the health of our nation.

But it also suffers from poor management and leadership which seriously affects its ability to dispense quality care.

User

Posted 12 Aug 2025 at 20:21

Great post

NHS from my experience has been absolutely disgraceful and I wouldn’t trust them to run a bath let alone be in charge of AS , the left arm with them really hasn’t got the foggiest what the right arm arm is doing

another well made point you make is the fact that once the prostate has been removed pathology has shown regularly that the cancer is worse than originally thought , I asked a NHS surgeon what percentage this was and he said it was over 40% so I then asked him if this was the case then why he was offering me AS when they clearly can’t guarantee that the cancer grading is correct , he had no answer other than look annoyed that I had dared to call him out

User

Posted 13 Aug 2025 at 07:41

Hi Mick.

This is a very interesting article on the increased use of active surveillance.

https://www.cancer.gov/news-events/cancer-currents-blog/2022/prostate-cancer-active-surveillance-increasing

It covers many of the points raised during this conversation.

Edited by member 13 Aug 2025 at 07:42 | Reason: Add link

User

Posted 14 Aug 2025 at 16:07

Hi Mick, valid comments throughout, in my particular case at 69 year old I had a psa of 5 followed by mri scan showing suspicious area.

Biopsy resulting in Gleason grade 3+4.

On considering treatment after mdt meeting of which AS was not offered I decided on Robotic assisted radical prostatectomy.

Now almost 3 years post surgery I am quite happy that I made the right decision.touch wood psa post surgery undetectable.

The post surgery pathology of my prostate came back small positive margin with epe but a down grade to gleason 3+3 which of course was good news.

Now as I say at the age of 69 year old I was happy with my decision, on the other hand if I had been a younger man having to cope with the ED & waterworks problems would my decision have been different & would I have decided on AS in those circumstances??????

I know Adrian won’t mind me mentioning it because he has stated previously that he went on AS & then went on to have surgery & his pathology came back at increased Gleason grade than initially thought on biopsy,

Between biopsy & post surgery pathology is a complete minefield.

Thanks Jeff.

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User

Posted 12 Aug 2025 at 20:21

Great post

User

Posted 12 Aug 2025 at 21:28

Thanks Mick. I saw that article and it got me thinking too.

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.

User

Posted 12 Aug 2025 at 22:32

To treat or not to treat radically, that is the question? Scans and biopsies have improved but still have a long way to go to get the sort of results produced by examination of a Prostate in a lab - being wise after the event you might say. I don't think doctors set out to mislead but are less inclined to recommend treatments they cannot give or know much about. If trusts do not offer a treatment doctors at some hospitals cannot offer it. Men don't seem to have a problem in getting a Multi-Parametric MRI but few centres have the capability of providing other expensive scans such as PSMA but even this has improved somewhat now being done on referral within the NHS. I was refused a PSMA scan on the NHS and paid for one privately a few years back but this changed my treatment plan. More hospitals have also purchased 'The robot', which has become the most used method for Prostatectomy now.

There are no certainties with PCa and it's treatment. I remember a well know doctor who mentioned that he treated a particular individual with RT (just like all the others which were successful), except in this case the cancer responded by breaking out throughout his body.

There is now the opportunity to get a second opinion within the NHS if you want a further opinion. Of course there are good doctors and inferior ones but unless there is a major breakthrough, men are going to continue to have to decide whether to opt for AS or early radical treatment. The price you pay for improving your chance or cure by early intervention will remain at increased risk of overtreatment and potential side effects. It is the GP's whose knowledge and manner is sometimes lacking and as I said in another thread where they are not well informed that should refer men to those that are.

Barry

User

Posted 13 Aug 2025 at 07:41

Hi Mick.

This is a very interesting article on the increased use of active surveillance.

https://www.cancer.gov/news-events/cancer-currents-blog/2022/prostate-cancer-active-surveillance-increasing

It covers many of the points raised during this conversation.

Edited by member 13 Aug 2025 at 07:42 | Reason: Add link

User

Posted 13 Aug 2025 at 07:43

This is a real difficult one for the NHS as they are damned if they do and damned if they don’t. For everyone who has un necessary treatment there will be others who may have waited and the outcomes are worse. I was borderline between AS and treatment with a suggestion that I should opt for treatment. My post surgery histology result was as per initial assessment- cancer present on one side but contained and not spread fortunately. I could have waited but for how long at which point it could have spread. Who knows? In the 2 1/2 years since I had surgery at Royal Liverpool they’ve introduced single port and I believe now also offer RT in 5 doses as opposed to 28 although I stand to be corrected on that. Treatments are improving but it’s the testing which seems to be the issue still. Until that improves then there’s always going to be a chance sadly of misdiagnosis or unnecessary treatment. I’m not having a go at the NHS as in my case I’ve nothing but praise for the way my situation was handled pre and post care. I maybe lucky with my experience of the Liverpool team and appreciate other areas may not be so fortunate

User

Posted 13 Aug 2025 at 08:23

Very interesting article Adi.

It's obvious that we are not the only country struggling with PCa treatment options.

This is nothing to do with funding or low wages, it's basic poor service. If the NHS were a business it would have to haul it's socks up drastically to avoid customers voting with their feet.

The NHS doubtless does some amazing things, has some wonderful staff and improves the health of our nation.

But it also suffers from poor management and leadership which seriously affects its ability to dispense quality care.

User

Posted 13 Aug 2025 at 18:49

I do think that the fairly recent big increase in blokes coming forward to be tested, which is how it should be, is a factor in promoting AS and suggesting overtreatment etc as NHS can't cope. The likes of prostate cancer diagnosis/treatment I think has a bit of catching up to do to perhaps the levels of diagnosis etc of breast cancer for example? Us blokes are in the main to blame of course, but the limes og GPs I think should have been more proactive over the years rather than saying youre too young for a PSA test etc.

Peter

User

Posted 14 Aug 2025 at 16:07

Hi Mick, valid comments throughout, in my particular case at 69 year old I had a psa of 5 followed by mri scan showing suspicious area.

Biopsy resulting in Gleason grade 3+4.

On considering treatment after mdt meeting of which AS was not offered I decided on Robotic assisted radical prostatectomy.

Now almost 3 years post surgery I am quite happy that I made the right decision.touch wood psa post surgery undetectable.

The post surgery pathology of my prostate came back small positive margin with epe but a down grade to gleason 3+3 which of course was good news.

Between biopsy & post surgery pathology is a complete minefield.

Thanks Jeff.

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