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PSA SIGNIFICANT INCREASE POST ERT

User
Posted 03 Jul 2025 at 13:46

ERT plus hormone treatment in July 2021. 6 mthly PSA tests until 1 year ago were all on target. This week 1st of annual checks, result a frankly scary 2.9. Well over the 2.0 at which consultant said I should be referred back, more than 2 over any other reading and an 11x increase rather than a doubling!

Yet GPs interpretation "normal, NFA". I don't understand, unless GP didn't notice that the test part of ongoing post-treatment monitoring. 

I have pointed out this bizarre judgement and insisted that a GP call me (next Tuesday).

Anything else I can do? I really cannot think that such an increase/level is pretty disastrous. 

Any comments welcome please!

Thanks, davej

User
Posted 03 Jul 2025 at 22:18

Chris, "Colwick" as in near Netherfield? 

Dave.

Edited to remove ref to Practice.

Edited by member 04 Jul 2025 at 09:30  | Reason: Inappropriate.

User
Posted 08 Jul 2025 at 22:25

Update. GP phoned on schedule. Once I explained the relevance of MY psa result to my treatment etc he immediately conceded that the level pretty high and yes I should be referred back to oncology ASAP. He did not disagree that my result judged against only the <6..5 without awareness of my history. Yes, the flag system needs to be reviewed for psa monitoring. 

I shall raise the inadequacy of the monitoring system formally with the Practice Manager shortly.

Back on ol' 2WW pathway......

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User
Posted 03 Jul 2025 at 15:30

Hi Dave,

Welcome to the forum, mate.

When and what was your lowest reading?

When and what was the reading previous to this last one?

Has there been an upward trend?

Is there a chance that 2.9 may have been inputted incorrectly? Did you read it or was it given to you verbally?

If it is 2.9 the GP is incorrect. It would only be in the normal range, NFA, had you not had any treatment. Have your  PSA checks been sent to your consultant or have they just been monitored by your GP?

Even if it did indicate a biochemical recurrence, or an emerging new tumour,  that would be disappointing more than disastrous.

I'm not medically trained but I would have thought they may recheck your PSA?

Best of luck, mate.👍

Edited by member 03 Jul 2025 at 15:39  | Reason: Typo

User
Posted 03 Jul 2025 at 16:57
Adrian makes a good point about ensuring PSA correct. (I assume no substantial exercise was done, sexual or otherwise a few hours before blood was taken). I would also ask GP to do a urine test to exclude your having a unary infection. If having done this and after repeating PSA test your consultant considers no further action, I would ask for a second opinion.
Barry
User
Posted 03 Jul 2025 at 16:59

Thanks Adrian56. 2.9 is clear to read in the test result which I have seen in my patient record. 

Lowest was 0.03, constant while on hormone follow up to ERT. Then 0.26 1 year ago before I went on to annual tests, I.e. 2.9 yesterday!

Results have all gone to a GP. As you say, I am pretty sure it was compared only with the standard, healthy, range of up to 6.5, with no reference to fact that I had cancer/treatment in July 2021. Simply was not reviewed in context of discharge letter from my Consultant. 

How they finesse their way out of admitting that negligence should be quite amusing!

Thanks for the note of optimism.

davej

User
Posted 03 Jul 2025 at 17:08

Sounds like either you ha the same GP as me or hopefully it has been read wrong and is 0.29. Do you have a contact in your urology department or do you have an app that displays the actual lab results.

Thanks Chris 

User
Posted 03 Jul 2025 at 17:11

Thanks Barry. Shouldn't have been impacted by any too recent exercise, but yes needs re-testing to rule out an aberrant reading. If the same, then I shall press for a 2WW return to the Consultant (although unfortunately my main man has moved on).

Seems to me that will probably watch with more frequent PSA tests and maybe scans etc of bones for spread. Renewed hormone treatment may be a possibility?

Surgery at near 77 and with heavy COPD (although I am pretty active, averaging 100 miles per week cycling for example) is not really an option.

Dave.

User
Posted 03 Jul 2025 at 17:13

Thanks Chris. I have seen the lab results. Definitely states 2.9 ug/L.

Dave.

User
Posted 03 Jul 2025 at 17:30

Originally Posted by: Online Community Member
How they finesse their way out of admitting that negligence should be quite amusing!

I complained four times in relation to serious mistakes made in my treatment. They denied it. It was only when I involved the Parliamentary Health Service Ombudsman that they started telling the truth, the whole truth and nothing but the truth.

 

User
Posted 03 Jul 2025 at 17:45

@Adrian. Sounds awful. Well done for persevering and going to the top. I hope I don't have to go to such lengths......but I will if necessary!

dave

User
Posted 03 Jul 2025 at 18:12

To prove clinical negligence. You have to show a failure in duty of care, including mistakes and omissions. That part is relatively easy. However, you also need to prove causation. You have to  show that because of treatment mistakes/omissions that you are worse off.

That's easy if they've operated on the wrong eye or cut off the wrong testicle, but to prove your cancer is worse than it should have been is virtually impossible because everyone's outcomes vary so much.

Edited by member 03 Jul 2025 at 18:30  | Reason: Typo

User
Posted 03 Jul 2025 at 19:05

^ point well made and understood. If I had taken "normal, NFA" at face value and not read/noticed the actual figure (and a few years ago I wouldn't have SEEN it), then no one would have known and the result of the "negligence" would have been impossible to measure. 

As long as they don't try to deny me follow up action then I have lost only a week. If they cover by saying all is OK then I shall get 2nd opinion, private if necessary. 

Again, thanks.

User
Posted 03 Jul 2025 at 19:59

Hi,  who did you speak to at the GP. The staff read a standard off their PC that assumes you've not had any treatment.  The GP should know better if you spoke to him.

The NHS app shows a band from 0 to 6.5 for normal if your result is on there.

 

Edited by member 03 Jul 2025 at 20:01  | Reason: Corrected minimum normal to 0

User
Posted 03 Jul 2025 at 20:16

Thanks Peter. Not yet spoken. The practice nurse who took the blood (who has been my COPD Nurse for 12 years!) said to view result on the practice website the next day.

I did and saw 1. reviewing GPs comment that "normal, NFA" and 2. result on which he was commenting that stated "2.9". I have received no "result" from Surgery but phoned, explained problem and secured a phone call next week.

We shall see......

User
Posted 03 Jul 2025 at 20:50

Yes it's computer says normal in the name of the GP. The GP doesn't review each case and the national system is the same.

GP systems also used to never show the < sign.  I don't usually have a psa test at the GP but experienced both problems.

User
Posted 03 Jul 2025 at 21:34

So, the system generates "normal" if below 6.5, irrespective of patient?

And puts that in the name of a designated GP at the Practice?

Sort of makes sense!

Thanks.

 

User
Posted 03 Jul 2025 at 21:49

My PSA blood tests either have a named doctor in the reviewed box is it says clinician reviewed. In the action box It usually say no further action even though I have no prostate. Last year when my PSA went over 6.7 the action box said, abnormal "need to see doctor", I also got a call saying I need to see a doctor. I think that shows that the surgery are only looking at the (0.0 -6.5) comment and not the note about post surgery 0.2 and RT 2.0 comment. 

I have made an official complaint to my GP about their lack of knowledge in regard to PSA testing, they are supposed to be introducing a new system to be more thorough with PSA tests. I have pointed out to them that they could have many post treatment men who accepting a "normal no further action" statement when they should be referred back to urology or oncology. I have recently joined the surgeries" patient participation group"and will be pushing for a better treatment of my prostate cancer peers.

My surgery missed a PSA of 6.9 in 2010 , almost by accident I had a PSA test in 2013 which was 7.7 and my journey began three years later than it should have done.

Thanks Chris 

User
Posted 03 Jul 2025 at 22:18

Chris, "Colwick" as in near Netherfield? 

Dave.

Edited to remove ref to Practice.

Edited by member 04 Jul 2025 at 09:30  | Reason: Inappropriate.

User
Posted 03 Jul 2025 at 23:13

Dave,  I wouldn't like to say the actual GP is named.  It said GP comment which you'd assume is your GP.

User
Posted 04 Jul 2025 at 00:29

Dave you probably shouldn't be naming GP surgeries.

Thanks Chris 

User
Posted 04 Jul 2025 at 07:55

Noted. Thanks.

 
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