PSA SIGNIFICANT INCREASE POST ERT

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 

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

Dave.

@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

^ 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.

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......

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.

Dave you probably shouldn't be naming GP surgeries.

Thanks Chris 

^ @ Adrian 56: "Even if it did indicate a biochemical recurrence, or an emerging new tumour,  that would be disappointing more than disastrous."

Why so? My original diagnosis was "T2c NO", a "plus" for treating recurrence, but Gleason was 9 and PSA from memory near 20, so a "minus".

I would probably accept renewed hormone treatment, but not  surgery even if an option. I am old and have had an interesting life, quality not quantity always my motto. Nor do I believe that limited NHS resources should be expended on me.

I just want to KNOW!

dave

Hi Dave.

All I was trying to say was if you have BCR or even a new tumour, it can be treated. It would obviously be disappointing to have to have salvage treatment but it wouldn't be disastrous as in life threatening.

Adrian 56:"All I was trying to say was if you have BCR or even a new tumour, it can be treated. It would obviously be disappointing to have to have salvage treatment but it wouldn't be disastrous as in life threatening."

I was being a bit strong I know, but probably "as in quality of life threatening." Prostate surgery not possible. RT only if already spread. Hormone treatment maybe?

In any case they might pull the age/<10 years life expectancy reason for no treatment. 

Start finding out tomorrow I hope.

Thanks for your good words.

Dave.

Thanks for the update Dave. Good luck mate, and please keep us posted.👍

Just marking time (and updating Will and LPA!) as I reacquaint myself with "waiting". Tried a couple of times to speak with Oncology to ask if private tests before 1st appointment worthwhile. Probably out-of-time now. Save the >2 grand for post-consultant appointment. With no hard evidence, I get the feeling that waiting lists on the rise again, possibly a continuing ripple effect of Covid.

I did get a pretty fulsome apology, excuse for failings and promises that urgent (further) improvements made to PSA Monitoring at my GPs.

Onward (and downward?).........

davej

Thanks Adrian. Yes, shambles comes to mind! Pity help those who for whatever reasons find it difficult to take control or understand the system and terminology.

davej

Have you debated scans?   A psa of 2.9 would be visible on a psma scan, and probably on a CT or standard PET scan.   If it was me I'd be asking for a psma scan and be making enquiries about one now both NHS and private.   Although a CT or PET Scan could be done almost immediately it won't find smaller lesions.  A psma scan can have a waiting list.

I've often thought I'd consider a private psma scan at around £3k.   I brought it up with my consultant well in advance and was told they'd put me forward for an NHS one when the time comes at psa >0.2 (which is stretching the detection capability), although it would be at a different hospital 50miles away.  I'd be wary about timescales though as from what I've read getting the radiation source can be touch and go on the day.   The consultant said I shouldn't have a private one as they'd cover but said they'd use it if I did.

As you may read elsewhere there are different types of radiation source Gallium-68 and Fluorine-18.

A confirmatory psa test will be a good thing.  I'd think they'll prescribe it before you see anyone.

Edited by member 08 Aug 2025 at 16:15  | Reason: Not specified

@Peter 2016. 

No one with whom to discuss yet! If PSMA seems the gold standard then if quicker I shall go private. I shall follow up your pointers. Thanks.

I also had rather expected a confirmatory PSA test, but none forthcoming. Then again, my GP judged 2.9 "normal, NFA" and even when I'd put them right they confused the referral. 

My COPD may well destroy my quality of life before the prostate does. The prognosis 12 years ago was 5 years of independent living I.e. no oxygen tank! Although my strength dropping still averaging 100 miles p.w. cycling, if 30 a day now about my limit. A minimum of 10 per day, every day, has slowed the progression.

I'd quite like another 18 months or so, to aid my partner through her next hip replacement, but then it'll be the one way ticket to Switzerland.

davej

An aside really. I have gained an impression that NHS response(s) times significantly slower than 4-5 years ago. Press reports etc would seem to confirm my experience, quite apart from specific GP failings.

Summary "search" throws up:

"

Waiting lists for prostate cancer treatment in the NHS have significantly increased in recent years, with some patients facing waits of over two months for treatment following an urgent referral. "

This at a time when increasing pressure for a routine testing programme. Not sure how that'll be squared.

Good luck all.

dave

Technology will transform diagnosis and treatment.  For example 5 doses of RT.  There's a video on YouTube by Dr Geo where a UK doctor claims imaging will transform how PCa is handled in the next 10yrs.

Edit:

(Dave, Your above reply time travelled to beat original post.  Because I deleted it and then re posted it with a smaller change than I planned)   :)

Edited by member 11 Aug 2025 at 10:02  | Reason: Not specified

Update. Saw a Consultant today. (Good rep and my partner who was with me had met him before with her brother a decade ago. I shared her view that a sound, down-to-earth, helpful, empathetic man.)

He didn't feel that 2.9 clinically demands immediate action. He agreed that PSMA-PET the ideal investigation. Despite his working also through the private sector he discouraged me from paying for it  -  "save your money and go on holiday!". Waiting time c. 2-3 months, but can be much quicker! He did not consider such a delay clinically relevant. (I think some reference by the Macmillan oncology nurse to national shortage of the radiation material.)

I think that had I not raised the question of PSMA-PET he would not have gone to that level yet. More in response to my wish/anxiety to know all ASAP. He saw little point in interim, quicker, less comprehensive imaging tests  -  this may or may not have been linked to resource issues!

He will see me again in 8 weeks, irrespective of whether or not PET has happened and I shall have psa and other bloods test 1 week before that. 

Treatment choices not for consideration until PET results.He was adamant that, for him,  choices not constrained by age.

So, nothing definitive, but as long as "a plan" I feel a lot more relaxed.

That'll do for now.....

dave.