Elevated PSA Post Prostatectomy/BCR - Seeking Reassurance - Personal stories

User

Posted 15 Jan 2025 at 00:47

Hi All

Unfortunately it's looking increasingly likely (yet to be confirmed) that I'm now dealing with a recurrence of my locally advanced PCa - I believe it's referred to as BCR (biochemical recurrence)?

Had radical Prostatectomy (RARP + LLND) in Dec 2020 (upgraded to T3bN0M0 after positive margins reported at surgery) and following routine 3-6 monthly PSA checks where the level remained "undetectable" or at typically <0.1ug/L, it's today risen to 0.25ug/L from 0.14 on 7th Nov and 0.11 on 22nd Oct.

Clinic follow up with Specialist Nurse team is scheduled for a couple of weeks time, but seeking any advice (and certainly reassurance) ahead of the same. Currently awaiting referral appointment with Oncology for over 2 months now.

Trying to remain calm and positive, but frustrated by Oncology initially indicating that they hadn't received any referral when chased prior to Christmas, and again today when arriving to give blood/check PSA only to be told that no 'order' for the same existed (eventually resolved after almost an hour on the phone with local Urology team).

Would welcome any information or advice ahead of my clinic as to what's likely to happen next (and how quickly) and particularly in view of recent PSA rises? Does anyone know threshold at which a PSMA PET scan may become viable (0.4ug/L?) - presumably dependant on individual Trusts? Trying not to confuse some likely osteoarthritis discomfort (knee/big toes) with the obvious!!

Very best wishes to everyone living and dealing with PCa, and thanks in advance for any help.

David

User

Posted 15 Jan 2025 at 08:54

David, I would advise you to get in touch with the PALS organisation at your hospital and get there help in pushing for an early oncology appointment. 8 years ago my surgeon said he woul be criticised if he let my PSA get much above 0.2 without intervention. That figure has crept up with the more wider use of PSMA scans.

As regards the viability of a PSMA scan seeing anything at 0.4, at either end of the scale we have seen detention at 0.023 and a seen nothing at 200. If the cancer is in one lump it is easier to see than if it is in say 10 locations.

I had salvage RT to the prostate bed as an educated guess without a scan ,there was something in the bed but clearly it was already further afield. My histology was also poor.

Thanks Chris

User

Posted 15 Jan 2025 at 09:05

Hi David,

I agree with Chris to keep pushing.

By way of a little reassurance, I had RALP in November 2019 and my histology showed a positive margin. My PSA began to rise in 2021 and I had salvage radiotherapy in 2022. My PSA is now <0.01 undetectable.

As for discussions with oncology, apart from PSMA scans, I would want to know what the treatment plan will be, will it be SRT just to the prostate bed or wider, and will it include hormone therapy?

Good luck.

Kev.

User

Posted 16 Jan 2025 at 15:05

Many thanks for getting back to me.

Now I'm even more annoyed having just received an apology from Oncology on their realisation that I've slipped through the net and should have been seen mid-December.

It's been a frustrating couple of days here having to chase this, but any obvious thoughts on what I should be asking of Oncology when I see them on 27th now? I'm going to try and push for a PSMA PET scan on the basis that my PSA is likely to breach the 0.4ug/L threshold pretty soon? I'm anticipating hormone therapy ahead of radiotherapy at some point but would clearly wish to avoid the latter until absolutely necessary. Any idea whether a "spacer" was offered or utilised as part of radiotherapy treatment. Will raise again with my local Maggie's Support Group when the opportunity next arises.

Thanks once again for any information and/or advice.

Best wishes, David

User

Posted 16 Jan 2025 at 21:06

David, when I had BCR about three years ago following surgery (with positive margins) I was told that their experience was that scans tended to be uninformative until PSA had risen to a level above 0.5 - but salvage treatment had a better chance of success if initiated earlier. I started hormone therapy straight away and had radiotherapy about 8 months later.

It is possible that scan technology has improved, but to me the fact that PSA is now above 0.2 and clearly part of a rapidly rising pattern suggests there is unlikely to be any benefit in delaying treatment.

User

Posted 16 Jan 2025 at 21:07

Hi David. In answer to your question:

Any idea whether a "spacer" was offered or utilised as part of radiotherapy treatment.

I don't believe you can use a Spaceoar for salvage radiotherapy as you have nothing to insert it between. Unfortunately with SRT your other organs tend to be more exposed to the radiation than with radiation used as the primary treatment. That's what my oncologist told me at least. My SRT did cause some bowel and bladder issues but nothing permanent. I had six months of Bicalutamide which is fairly commonly used with SRT. Apart from the breast bud growth (which went away after about four months) I found it fairly tolerable.

User

Posted 16 Jan 2025 at 21:52

David, I was under the impression that the spacer technique was not used after a radical prostatectomy, but a bit of research suggests it has been used ,so worth investigating more. My salvage RT did some rare irreversible damage to my bladder.

Hope all goes well your treatment.

Thanks Chris

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Elevated PSA Post Prostatectomy/BCR - Seeking Reassurance

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