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Did your GP check for increase in PSA scores?

User
Posted 30 Aug 2026 at 21:14

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     

User
Posted 31 Aug 2026 at 16:53

My experience no they don't monitor. You do it yourself and end up reminding them when action is required. 

User
Posted 31 Aug 2026 at 22:47
GPs are basically s11t at prostate cancer diagnosis and monitoring.

You have to be an informed patient and trust no one except yourself.

User
Posted 30 Aug 2026 at 21:14

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     

User
Posted 31 Aug 2026 at 11:51

For me my first PSA was 28 so velocity was irrelevant to me. I am of the slightly unpopular belief that prostate cancer screening with the current PSA test should not be done, as it has both false positives and false negatives to an unacceptable rate.

PSA Velocity is a far superior test to the current test. I would recommend any man over 50 or in a high risk group to get a PSA test, record the results and do this at least every two years and then more frequently if the PSA is increasing. I think PSA velocity is much more useful than PSA alone. 

As for getting this implemented? Not a chance with the way the NHS works at the moment. Every current medical test that one has on the NHS produces one number. Your number is either above or below the target. Expecting a medic to do a calculation on two numbers is a pipe dream. As for automating it with computers? I have worked in large organisations, this is an easy technical fix, but it would require a culture change which would be blocked at every level. Bear in mind that the NHS was still using fax machines and not using email, until about 3 years ago. They stood with a technology that was 30 years out of date, because they are that afraid of change.

Dave

User
Posted 31 Aug 2026 at 13:00

Originally Posted by: Online Community Member
 I am of the slightly unpopular belief that prostate cancer screening with the current PSA test should not be done, as it has both false positives and false negatives to an unacceptable rate.

Hi, Dave.

I'm also in the 'unpopular belief group' regarding PSA screening.

I feel, lots could be done to improve the detection and treatment of his disease, but basically it comes down to a lack of resources and cost implications. 

Hi, BillCR.

If I haven't already, welcome to the forum, mate.

I'm sorry that your concerns weren't addressed earlier. I was diagnosed during Covid and a couple of quite serious errors were made in my treatment. 

I took me almost two years of complaining, and eventually having to use the might of the Parliamentary and Health Service Ombudsman, to get an apology from the Trust involved. They say, as a result of my complaint, that they have improved their active surveillance protocols. 

My PSA fluctuated between 5 and 7 during my active surveillance, yet I was eventually diagnosed Gleason 9(4+5), with capsular breach, T3a. I also had a prostate that was three times bigger than normal, so I'd have expected my PSA levels to have been much higher and shown a much more significant rise.

Please keep us updated. Good luck with your campaign and your treatment.👍

Edited by member 31 Aug 2026 at 13:04  | Reason: Additional text

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User
Posted 31 Aug 2026 at 11:51

For me my first PSA was 28 so velocity was irrelevant to me. I am of the slightly unpopular belief that prostate cancer screening with the current PSA test should not be done, as it has both false positives and false negatives to an unacceptable rate.

PSA Velocity is a far superior test to the current test. I would recommend any man over 50 or in a high risk group to get a PSA test, record the results and do this at least every two years and then more frequently if the PSA is increasing. I think PSA velocity is much more useful than PSA alone. 

As for getting this implemented? Not a chance with the way the NHS works at the moment. Every current medical test that one has on the NHS produces one number. Your number is either above or below the target. Expecting a medic to do a calculation on two numbers is a pipe dream. As for automating it with computers? I have worked in large organisations, this is an easy technical fix, but it would require a culture change which would be blocked at every level. Bear in mind that the NHS was still using fax machines and not using email, until about 3 years ago. They stood with a technology that was 30 years out of date, because they are that afraid of change.

Dave

User
Posted 31 Aug 2026 at 13:00

Originally Posted by: Online Community Member
 I am of the slightly unpopular belief that prostate cancer screening with the current PSA test should not be done, as it has both false positives and false negatives to an unacceptable rate.

Hi, Dave.

I'm also in the 'unpopular belief group' regarding PSA screening.

I feel, lots could be done to improve the detection and treatment of his disease, but basically it comes down to a lack of resources and cost implications. 

Hi, BillCR.

If I haven't already, welcome to the forum, mate.

I'm sorry that your concerns weren't addressed earlier. I was diagnosed during Covid and a couple of quite serious errors were made in my treatment. 

I took me almost two years of complaining, and eventually having to use the might of the Parliamentary and Health Service Ombudsman, to get an apology from the Trust involved. They say, as a result of my complaint, that they have improved their active surveillance protocols. 

My PSA fluctuated between 5 and 7 during my active surveillance, yet I was eventually diagnosed Gleason 9(4+5), with capsular breach, T3a. I also had a prostate that was three times bigger than normal, so I'd have expected my PSA levels to have been much higher and shown a much more significant rise.

Please keep us updated. Good luck with your campaign and your treatment.👍

Edited by member 31 Aug 2026 at 13:04  | Reason: Additional text

User
Posted 31 Aug 2026 at 16:53

My experience no they don't monitor. You do it yourself and end up reminding them when action is required. 

User
Posted 31 Aug 2026 at 21:07

NICE's guidelines only apply to men with symptoms. (Same with BAUS's guidelines.) Did you have symptoms?

For men without symptoms, the guidelines were published by NHS England (PCRMP), and the limit was a PSA of 3 regardless of age. This is the same limit which is used across the EU and by the TRANSFORM trial too for men without symptoms (which is the definition of screening). So assuming you had no symptoms, your GP used the wrong PSA reference scale, but so do most GPs.

With the removal of the right to screening (even on request), the PCRMP has recently been withdrawn, so the NHS no longer publishes PSA thresholds for men without symptoms. You can find the last copy here [Wayback machine].

With regard to using PSA velocity in screening, no screening program in the world uses that. It adds complexity, and although research shows it can find cancer earlier, there is no evidence that it improves outcomes.

Your campaign to take account of PSA velocity would need to find some data which showed it improved outcomes. Again I'm assuming you had no symptoms, in which case using PSA velocity would need to have been in the PCRMP in your case rather than (or in addition to) the NICE guidelines, but as the document where it would have needed to be has now gone, so your campaign would need to start with reintroducing that, i.e. offering screening, even if not a national screening progamme.

This area is now a complete shambles in the UK, and will directly result in more deaths. The US stopped screening on request in 2012 just like we have just done, and had to reintroduce it in 2018 because of the increased numbers of men diagnosed later stage. Mathematical modeling suggests this change will have increased the deaths from prostate cancer in the US by 13% to 20%.

User
Posted 31 Aug 2026 at 22:47
GPs are basically s11t at prostate cancer diagnosis and monitoring.

You have to be an informed patient and trust no one except yourself.

User
Posted 07 Sep 2026 at 21:29
I agree with DaveDob. The frequent calls by celebrities for prostate cancer screening assume there is a known PSA level above which you have cancer, and GPs of course are used to other screening tests where there is a defined threshold between "normal" and "problem".

But for prostate cancer, while PSA of no concern (perhaps 3 or less) and high PSA (perhaps 10 or higher) might be correctly identified there will be an awful lot of results in between where the patients hopes for something to be done when there might not be a risk sufficient to undergo a treatment which has a high probability of having life-affecting side effects.

It needs a more sophisticated approach if any sort of screening is to be helpful. The obvious one is to do repeat measurements on patients in the "can't be sure" range after 3 or 6 months which can indicate an active cancer, and prioritising those with other risk factors such as family history or experience of infections likely to be associated with urinary retention. Unfortunately that doesn't fit with the traditional idea familiar to GPs of a screening test being a one-shot yes/no answer.

User
Posted 09 Sep 2026 at 14:54

An error easily made is to believe the GP has seen your result. If you don't hear it direct from the GP it will have been read by a clerical member of staff from a cribsheet that says something like 'if below 4.5 over 60 then normal'.

 

User
Posted 10 Sep 2026 at 08:25

I believe Peter 2016 is correct. My GP's nurse told me that the 'Normal - no action' comment on my PSA test reports were added by the lab but of course the lab doesn't know my history (no prostate) . My GP never raised a red flag. 

User
Posted 10 Sep 2026 at 10:39

I've just checked my medical records on systmonline 

My last PSA results were recorded as

 Serum prostate specific antigen level < 0.02 ug/L [< 4.5]

Please note, new age related reference intervals for PSA from 2nd October 2023 (see NICE NG12 2023). Males of black ethnic origin have lifetime risk of of 1 in 4 compared to 1 in 8 for white men of developing prostate cancer. Please note: In patients who have been treated with radical prostatectomy/radical radiotherapy, upperlimits will be different, please refer to local Urology guidance.

It then goes on to say that the result had been reviewed by one of my GPs.

Serum prostate specific antigen level Report, Satisfactory, No Further Action (Patient Informed). (Dr's name and time/date reviewed.)

I don't know if the GP knew that I'm prostateless or not. I wasn't informed of the result. Which is why I always check my own results. 🙂

Edited by member 10 Sep 2026 at 10:49  | Reason: Additional text

User
Posted 19 Sep 2026 at 11:52

My opinion now is that those not offered a PSA test, that can afford to pay,  have an anual PSA test anually. Any sudden rise in PSA should be reported to your GP.

User
Posted 20 Sep 2026 at 03:28

For balance, I'll offer a dissenting view 😏

Over about ten years before my psa attracted attention at ~10, I had annual psa tests that rose very gradually to about psa 6, two years before I was treated. A visiting GP didn't include a psa test the year after the psa 6 and before I hit 10, and that [2 year] interval was probably the difference between the G9 + seminal vesicles + 3 lymph nodes and what might have been a G7 [guessing] if I'd had the psa test a year earlier. 

My GP [and I] should probably have acted at psa 6 but I suspect they're sometimes reluctant to make the call. 

Overall thinking, my psa rose slowly but steadily over a number of years and for most of them I had annual psa checks. I had no symptoms until psa 10, when I had blood in my semen but the message was there in the psa tests for several years before hitting critical level.

Jules

User
Posted 20 Sep 2026 at 08:06

Hi Jules,

Do you think that cell Gleason grades change with time or that the higher grade % of the total lesion increases being faster growing? I've long thought Gleason would keep constant seeming to be genetic. 

The seminal and lymph nodes would be more effected with time.   regards Peter

User
Posted 20 Sep 2026 at 08:54

Originally Posted by: Online Community Member

Hi Jules,

Do you think that cell Gleason grade change with time or that the higher grade % of the total lesion increases being faster growing?

I was just going to make the same point, Peter.

It seems that an accurate initial Gleason score does not increase in grade. However, it's quite common for biopsies to miss higher grade cancer cells. Which is why, Gleason grades are often upgraded after surgery, where the prostate can be more thoroughly examined.

In Jules case, it may have been better to have further diagnostic procedures when his PSA was getting close to the 6.5 abnormal range. His Gleason would most likely still have been Gleason 9 (4+5) but the spread may have been less, or even still prostate confined.

If you look at my bio you'll see that I was initially diagnosed Gleason 6, prostate confined, T2c. I went on active surveillance for 2 years, which eventually showed that the disease had progressed. I had surgery and ended up Gleason 9 (4+5), capsular breach T3a.

I've obviously done a lot of research on why this could have happened! I've eventually put it down to the consultant who did the initial biopsy, being an awful darts player, missing all the higher numbers. 😁

I put the unseen and unrestricted growth of my underrated tumours down to the poor monitoring on my active surveillance. Due to 'clerical errors' my follow up MRI was almost 18 months later than it should have been.

Having said that, my PSA didn't help much either. Despite my 'significant disease progression', my PSA checks, didn't ring any alarm bells and just kept fluctuating at  5-7 levels.

C'est la vie. 🙂

Getting back to Gleason scores. Although a 'true' Gleason score shouldn't get higher, apparently it is possible that multiply lesions could all have different grades. My second biopsy showed this. I had multiple tumours ranging from 7 (3+4), 7(4+3), 8 (4+4) to 8 (3+5) apparently you're given the highest score, which in my case was 8 (3+5), because it contained a 5. None of this really mattered, because once they examined to removed prostate, it was all upgraded to Gleason 9 (4+5) 🙂

Edited by member 20 Sep 2026 at 09:38  | Reason: Additional text

 
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