PSA SIGNIFICANT INCREASE POST ERT

User

Posted 04 Jul 2025 at 11:27

^ @ 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

User

Posted 07 Jul 2025 at 19:40

My GP surgery really let me down I feel, but from the moment I got thru A&E, my treatment / service has been unbelievable.

User

Posted 07 Jul 2025 at 20:18

Originally Posted by: Online Community Member

^ @ 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".

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.

User

Posted 07 Jul 2025 at 21:06

Originally Posted by: Online Community Member

My GP surgery really let me down I feel, but from the moment I got thru A&E, my treatment / service has been unbelievable.

In general yes - GPs definitely the poor end of the NHS. Glad you got better elsewhere.

Dave

User

Posted 07 Jul 2025 at 21:12

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.

User

Posted 08 Jul 2025 at 23:25

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......

User

Posted 09 Jul 2025 at 10:30

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

User

Posted 18 Jul 2025 at 10:09

So, yesterday (17/7), I receive 2 letters from Surgery, 1 dated 9/7, 1 14/7. The former is a routine referral to Urology, I should phone hospital direct if no response by 3/9. The more recent a 2WW Referral to Urology, I should chase if no response by 16/7! Only the cycnical would imagine that the alteration triggered by my letter of complaint re whole shambles of PSA analysis.

As advised I call Urology Referrals. As helpful and competent and friendly as always. They had considered and transferred to Oncology 4 days ago. "System" showed an appt already booked, 21/8. Advised me to call Oncology to confirm.

Call Oncology. Again, just lovely! Yes, appt booked. I mentioned not 2WW. Well, been reviewed by specialist nurses and booked for earliest and most appropriate Clinic. Letter on way, appt as said by Urology. My offer to be put on short notice for cancellations was accepted.

So, just wait.......doubt extra few weeks make any fundamental difference to outcome(s). Different matter if I had simply accepted "Normal, NFA".

Might fill the time rattling the GPs' cage.

Moral of the tale? Take nothing at face value.

Dave.

User

Posted 08 Aug 2025 at 09:57

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

User

Posted 08 Aug 2025 at 10:33

Hi Dave.

Thanks for the update. The communications seem dreadful. I hope you get your oncology appointment and that they establish the reason for your PSA rise.

Your moral of 'take nothing at face value' is so apt. Since my earlier treatment cock-ups, I double-check everything and where ever possible manage and monitor my own care.

Good luck, mate.👍

User

Posted 08 Aug 2025 at 10:48

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

User

Posted 08 Aug 2025 at 15:56

The path that cancer can take is difficult to predict but I think it is worth being prepared and evaluating further treatment options at an appropriate time before ruling all out before the need for a decision needs to be made. Treatments are evolving and improving; much depends on where the spread is and how much there is of it, also what treatment you have previously had.

Using my own case as an example, my Radiotherapy did not eradicate all the cancer in my Prostate but two sessions of very easy Focal treatment, (in my case HIFU), the last being when I was 85, seems to have been successful. I took this option rather than start HT which was the alternative offered and I would have been on this until it failed or I did. Fortunately, it hadn't spread outside the Prostate. Had it done so I would have considered more highly directed RT, depending where it had gone and how much of it there was. Some Oclologists treat more aggressively but perhaps less so in the UK. Should my cancer return, I will probably be offered HT but doubt I would want to be on this for my remaining years as quality of life becomes of more concern, apart from other problems associated with old age.

Barry

User

Posted 08 Aug 2025 at 17:09

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 17:15 | Reason: Not specified

User

Posted 08 Aug 2025 at 17:37

Thanks Barry. Much good sense and advice. My appt is now less than 2 weeks so I'll await that I think.

User

Posted 08 Aug 2025 at 17:57

@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

User

Posted 08 Aug 2025 at 19:58

Originally Posted by: Online Community Member

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.

Dave, think very, very carefully about that!

With dodgy hips it would be much kinder to send her to Holland. Its much flatter there.

User

Posted 08 Aug 2025 at 20:09

That's very good! My sloppy drafting set it up for you!

davej

User

Posted 08 Aug 2025 at 23:30

You lot make me laugh. GPs make me seeth!

User

Posted 11 Aug 2025 at 09:52

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:

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4tpMEC5WyG0RDUIiQVeQeFcgyFlZiMb58Ga12QwW/TRmQYkg/uJzwn4wL7a+aQMbnJxRP0xaO/okA9qengq+EYNINzbNl6KSxbDoIM1wZxC4E4FyVDHfVnzHLnnvySe5xIPCmhFGFjqJShW3EECelWkMEGG4OxBpPD4OEkckcCDAELMG6o/rCQXJCIG4/EHBJ7WoUBDljywRPhEf4yWayqr6Nfktqj+BeaLTWjArd6hoxMbDkN4yCUVJLUyFipRMdSxdItS0NjpVOSBBKryIZpyKgJrLFhZD4CxqZVW03qSS388ssMBkNNZ0JqNDinFlxpT4eUJFZolSgbamGVYgrEWonA9z3q0VgLIq2G5hKU9BEwMWjmlxg083WaacZDQ2vJtoPFY7JWQIhBBEfsLJEzK+hxeWSQ4SOmRsFtagy3CfetLNzU/wFoM5bTaqtZ2gAAAABJRU5ErkJggg==

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

User

Posted 11 Aug 2025 at 10:39

@Peter 2016. Let's hope so, but it will all surely depend on funding and staffing levels and difficult to be optimistic about those constraints on progress.

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