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Strange Chicken

User
Posted 27 Mar 2025 at 05:25

Hello . I am new on here . I was diagnosed in October 2023 . I am now 63 years old . I was admitted to hospital in July 2023 after a routine blood test at my GP revealed an alarming creatinine level suggesting Kidney failure was imminent  . I was given a blood test in hospital which showed PSA of 4.3 and a rectal digital exam revealed nothing sinister on the prostate . Subsequent MRI did not show anything of concern . I was catheterised to release over a litre of urine and booked in for a HOLEP to relieve pressure on the water pipe  caused by benign prostate hypertrophy once kidney function had recovered . Biopsy of the removed tissue showed a Gleason 9 (5+4) cancer . Further scans revealed a T2c N1 M0 with several peri rectal nodes up to 8 mm . I am on Zoladex and Abiraterone for 2 years and have had 28 sessions of EBRT at Christie’s . My PSA dropped to <0.01 and has stayed there  since February 2024 . One of those low PSA high aggressive jobs which wouldn’t have been picked up on routine screening (!) Results are encouraging so far but this is a very high risk cancer 

User
Posted 27 Mar 2025 at 05:25

Hello . I am new on here . I was diagnosed in October 2023 . I am now 63 years old . I was admitted to hospital in July 2023 after a routine blood test at my GP revealed an alarming creatinine level suggesting Kidney failure was imminent  . I was given a blood test in hospital which showed PSA of 4.3 and a rectal digital exam revealed nothing sinister on the prostate . Subsequent MRI did not show anything of concern . I was catheterised to release over a litre of urine and booked in for a HOLEP to relieve pressure on the water pipe  caused by benign prostate hypertrophy once kidney function had recovered . Biopsy of the removed tissue showed a Gleason 9 (5+4) cancer . Further scans revealed a T2c N1 M0 with several peri rectal nodes up to 8 mm . I am on Zoladex and Abiraterone for 2 years and have had 28 sessions of EBRT at Christie’s . My PSA dropped to <0.01 and has stayed there  since February 2024 . One of those low PSA high aggressive jobs which wouldn’t have been picked up on routine screening (!) Results are encouraging so far but this is a very high risk cancer 

User
Posted 28 Mar 2025 at 07:43

Hi thanks for the reply and best wishes for your future progress   Yeh T2c , good question . I am due to finish zoladex and abiraterone in January 2026 . I have 3 monthly blood tests . I assume they will continue indefinitely . Yes this is a weird one ! Story of my life so far Haha .

User
Posted 28 Mar 2025 at 08:10

Hi , I have just asked Dr.Google and the AI generated reply is that T2c  can have localised lymph node involvement . Still very high risk and that is probably why  I am on abiraterone as well as Zoladex  . Will keep you posted . I am being closely monitored by a brilliant team at Christie’s Manchester 

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User
Posted 27 Mar 2025 at 22:44

Welcome. Keep us informed, it is a bit worrying being N1. Another thing to consider is how to monitor after you have finished treatment. As it didn't produce much PSA pre treatment it is reasonable to assume that if it returns it won't produce much PSA. So PSA monitoring might need to be at a lower threshold.

Dave

User
Posted 28 Mar 2025 at 06:49

Hi and thanks for the reply . Agree with everything in your post . I should have added that my father died of it aged 62 (34 years ago ) and my brother died of it 12 months ago , aged 64 . His PSA at diagnosis was 1760 ! My point is that screening would not have picked up my cancer , and is it even related to his as the behaviour is very different . There is so much we don’t know 

User
Posted 28 Mar 2025 at 07:35

Hello mate.

Welcome to the forum, thanks for posting.

I'm sorry to hear about your father and brother. Both my dad and my younger brother were also diagnosed with it. Fortunately, my dad died with it, rather than from it, and my brother, like me, appears to be recovering from it.

Your case shows that PSA testing is only an indicator. We've seen cases where high PSA levels have no or low grade cancer, and others where low PSA levels have shown high grade disease. I think research is being done to try and improve PSA testing and reduce these apparent anomalies.

My post prostatectomy showed I was T3a, N0 M0. Gleason 9 (4+5) yet for years my PSA levels were lowish fluctuating between 4 and 5. I always thought that there would be a direct correlation between PSA and Gleason score, but this obviously not always the case.

Unfortunately, high grade PCa producing low PSA tends to lead to worse outcomes. As recent research shows:

https://www.sciencedirect.com/science/article/pii/S0959804922018287

I see that your were a T2c staging, which indicates the cancer was in both lobes but prostate confined. I'm a bit confused how you can have lymph node involvement with a T2 staging. Perhaps someone would be kind enough to inform me.

When do you finish your Abiraterone and Zoladex?

I very pleased to see that your PSA level has remained undetectable for over a year now, long may it continue.👍

User
Posted 28 Mar 2025 at 07:43

Hi thanks for the reply and best wishes for your future progress   Yeh T2c , good question . I am due to finish zoladex and abiraterone in January 2026 . I have 3 monthly blood tests . I assume they will continue indefinitely . Yes this is a weird one ! Story of my life so far Haha .

User
Posted 28 Mar 2025 at 08:10

Hi , I have just asked Dr.Google and the AI generated reply is that T2c  can have localised lymph node involvement . Still very high risk and that is probably why  I am on abiraterone as well as Zoladex  . Will keep you posted . I am being closely monitored by a brilliant team at Christie’s Manchester 

User
Posted 28 Mar 2025 at 08:11

Originally Posted by: Online Community Member

My point is that screening would not have picked up my cancer , and is it even related to his as the behaviour is very different . There is so much we don’t know 

That depends what form the screening took. The PSA level used in most of Europe is 3 regardless of age. I'm told that's also NHS England's recommendation, although not NICE's which is age stratified, and in practice no one uses NHS England's recommendation in the UK.

In the UK case finding trials, the NICE age stratified ranges were used. However, afterwards in one of them, the men whose PSAs were below the NICE age stratified referral levels but above 3 were written to and explained that in most of Europe, they would have been referred for further tests and if they wished, the hospital would take them in for an MRI scan and if necessary a biopsy. This found a significant number of significant cancers.

An interesting question is what would have happened to these cases if they hadn't been brought back. Some would probably not have another test, at least not without a national screening program, and only been picked up when the disease became advanced and caused symptoms. In most other cases, their PSA would have gone over the age stratified threshold eventually, and if they had another test, they would have been picked up. Mostly their disease would have progressed further by the time they were picked up, but would that have made any difference to their offered treatments and outcomes? It's now both impossible and unethical to run a trial which relies on a control group of men not being PSA tested, so we cannot collect data on what happens if you don't test or don't treat.

User
Posted 28 Mar 2025 at 08:21

The abiraterone does cause a few strange side effects initially  . For example my liver function went crazy bad . My ALT level went to over 300 . Now I enjoy the odd opener , brightener , lifter , sniffer , snort , snorter , snorterino , snorterino de luxe , but that was a real shocker . If has now set to a more sensible 17-19 .  

User
Posted 28 Mar 2025 at 08:24

Thanks Andy for your reply . Yes it is a tricky soo on testing / screening . 

 
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