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User

Posted 03 Feb 2026 at 12:51

Hello friends,

I don't often say much about my own case but it is quite a knock back when you learn your treatment has or has likely failed, particularly when you have been told several times you are in remission!

Things were looking good for me for about 3 years following my initial RT with nothing seen on MRIs and low and stable PSAs. But then PSAs started to increase slowly but at an increasing rate. In due course I had my first HIFU but this only resulted in one reduced PSA before it started to increase again. So after quite a bit of resistance from UCLH, mainly because they read a scan differently to other hospitals, whereby they thought an Iliac Lymph node was affected, as well as there being some cancer in my Prostate, I had a second HIFU in December 2021. This resulted in a low and stable PSA of 0.05 to 0.06 until 19th August 2025, when I was again told I was in remission. However, on 14th January 2026, my PSA had increased to 0.08. I reported this to a Doctor at my 6 monthly check up last week. He thought like I did, that they would just monitor my PSA in July and then December, when I was also due for an MRI. However, he must have reported this to a more senior colleague because only a couple or so days later I received an email asking me to come for the MRI on 2nd March rather than wait for this in December! (I was not informed of the reasoning for this change.) So no mention was made of my being in remission in my appointment this time and I am now left with apprehension. Naturally, I think ahead about possibilities, but know it is most likely to be some sort of systemic treatment, if treatment is recommended, something I was offered prior to my last HIFU but rejected, (a decision another major hospital supported.) I am reminded of the words "....just when you thought it was safe to go back into the water". It's being asked to have the MRI so quickly rather than the PSA of 0.08 that has raised concern. To be frank, I have learnt about so many relapses, years later in some cases, I have always treated being 'in remission' with some scepticism.

Barry

User

Posted 03 Feb 2026 at 17:06

I'm sorry to hear your news Barry, that must have come as a blow after all this time. I'll keep my fingers crossed for you, and hope they don't find anything too sinister at the MRI. I don't think any of us really breathe a sigh of relief, and think "well that's it, I'm cured", but that doesn't make it any easier to tolerate when it's your turn, I'm sure. Try and stay positive until you have the scan, and know what you are dealing with.

Ian.

User

Posted 03 Feb 2026 at 19:50

Thank you Ian and to anybody else who may reply. Even if this proves to be a recurrence, I am grateful for thetreatment that has got me so far following diagnosis in 2007. It's a matter of waiting to establish where I am yet again before deciding what if anything I might do.

Barry

User

Posted 03 Feb 2026 at 21:25

Hi Barry.

I haven't a clue what PSA levels should be, after radiotherapy and two lots of HIFU. However, I know that any steady rises are worrying.

Am I right in saying that your PSA rose to 0.06 at the beginning of Jan 24 and fell to 0.04 six months later. If so, couldn't this latest rise be a similar blip?

Also, although, you've had RT plus HIFU, won't you still have some remaining healthy prostate tissue which could continue to produce PSA and which may slightly increase over time. (Persistent Benign Tissue)

Whatever it is, I hope it falls or stabilises and further treatment is not required. You've been dealing with this disease for nearly twenty years, which must be very wearing. Yet most of that time, you've still found time to help others on here.

You're a top bloke, mate.

Good luck.👍

Edited by member 03 Feb 2026 at 22:09 | Reason: Typo

User

Posted 04 Feb 2026 at 05:06

Barry if your PSA is still only 0.08 when you still have a prostate I do not know what you are worrying about.

Previous re treatment has been at much higher levels so until it is >2.0 stop worrying. I suspect your private healthcare supplier may be worrying you for no reason.

User

Posted 04 Feb 2026 at 21:27

Originally Posted by: Online Community Member

Barry if your PSA is still only 0.08 when you still have a prostate I do not know what you are worrying about.

Previous re treatment has been at much higher levels so until it is >2.0 stop worrying. I suspect your private healthcare supplier may be worrying you for no reason.

Thank you for your thoughts. As Adrian said, my PSA in Jan 2024 was 0.06 and subsequently fell back to 0.04 before increasing to 0.08 recently, the highest it has been since my second HIFU. I know that PSA can fluctuate to some extent and reasoned this was stretching the upper range a little to 0.08. The doctor who spoke with me at my telephone appointment 0n 28th Jan 2026 tended to agree. He said it would be left that my PSA would be considered in six months time and my next MRI would be in December 2026 as scheduled. However, he appears to have been overruled because only one day later, 29th Jan, I received an email from UCLH saying they had brought forward the MRI to 2nd March. Why would they do this, particularly as it was NHS (not private), if there was no reason for concern? I think anybody in my position would be concerned if not worried by this. Another factor is I was told at the time they gave my second HIFU, that they would not subject my Prostate to further radical treatment, so if it failed it would be systemic treatment, most likely HT and I don't really want that at my age! This again I would think doesn't explain why the haste for the MRI. Will let you know what transpires.

Barry

User

Posted 05 Feb 2026 at 07:16

I think they probably do the MRI to better be safe than sorry. Very much hoping that this ends up providing you more reassurance than worry, although I know it is impossible to alleviate worry. Others on here wish they had been scanned more frequently. So hoping you can see this as a security measure and that you can keep mentally occupied til the scan. Strangely, we find that the wait-and-see between PSA tests and scans is much harder in these winter months but are trying to get out walking every day for mental health.

User

Posted 07 Feb 2026 at 00:27

I sincerely hope your MRI result is nothing of concern Barry. All the best, Ange x

User

Posted 08 Feb 2026 at 13:46

Thank you for comments and support. Thinking back to the recent telephone appointment I had with a doctor, I did mention that my urine flow was slower and less strong in the last few months and that sometimes when I get off a chair, a few drops of urine could sometimes escape. I was told that this is called stress incontinence and could be down to things other than PCa. (I have been on Tamsulosin for many years). I think this is a possible reason for bringing the MRI forward. I know some people have a TURP operation for this, whereby some of the Prostate is reamed away to reduce pressure on the Urethra. Mustn't get ahead of myself but naturally, one thinks about possibilities.

Barry

User

Posted 10 Feb 2026 at 23:06

Hi Barry,

Sorry to read about this and your concern. I've read your pursuit of treatments with interest.

Doesn't an MRI seem inadequate with a psa of 0.08? Your psa has doubled in 18 months, the possibility of more focal treatment might be being explored as it appears there's over a year, maybe two, before it gets to a stage where a psma scan would give a confident answer.

Also my psa seems to go up and down and I had surgery.

My oncologist suggested that I could let mine run as it was doubling every 3yrs and have systemic treatment when I'm in my 90s, or as she said, something else gets me Although I was offered immediate radiation.

Hopefully you'll find another avenue to take if they're showing an interest.

All the best,
Peter

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