The fear returns but the kindness on here will help

User

Posted 13 Nov 2025 at 18:38

Hi Folks,

I first came on here in 2020 when first diagnosed and was very grateful for all the advice, support and most importantly the kindness I was given, especially @Andy62 who reach out directly to me. It has been a journey, I had recurrence 11 months after RP and then had SRT in 2021. I was starting to feel I had a good bit of clear sky between me and the C-word. Unfortunately, my PSA rose to 0.1 last month and this month gone to 0.2.

I hope it is ok to come back on here and ask for some further advice. I have put a summary of my medical history below but my questions are:

Do you think I will have any options with curative intent?

Will I be able to avoid HT, scares the life out of me and I don’t think I can take it as treatment option?

At what stage will they take action?

Does anyone have any experience of PARP or Cyberknife treatments?

Has anyone else been in a similar position to me and how is it going?

How can I get referred for clinical trials or to Royal Marsden where it seems to be the leading centre for not just prostate cancer treatment but brca2 gene mutations.

HISTORY

Age: 54

Genetic Status: BRCA2 mutation confirmed

Initial Diagnosis: Prostate cancer, Gleason score 4+3

Primary Treatment:
• May 2020: Radical prostatectomy (clear margins)

Recurrence:
• Biochemical recurrence detected in 2021

Secondary Treatment:
• 2021: Salvage whole-pelvis radiotherapy (completed; lifetime dose reached) No HT

Current Status:
PSA less than 0.1 after SRT (we don’t get ultra sensitive psa test in Scotland sadly)

Oct 2025: 0.10 ng/mL

Nov 2025: 0.20 ng/mL

Constraints:
• No further pelvic radiotherapy possible

Treatment Goals:
• Non-hormonal systemic therapy options (e.g., PARP inhibitors)
• Clinical trials for BRCA2-positive recurrence

Location: Edinburgh, Scotland

Kindness and Strength to All.

Thank you

User

Posted 13 Nov 2025 at 23:05

Northstar, why is further pelvic radiation not possible. I had a similar journey and after salvage RT I had some PSMA scans that saw cancer in pelvic lymph nodes, I had SABR treatment to two pelvic lymph nodes in two separate occasions. I have finished up on HT.

Thanks Chris

User

Posted 14 Nov 2025 at 09:23

Thanks Chris, That is re-assuring to know and something I will take up if I can get to see a consultant. I was inititally told over the phone that a consulatnt wont see me until it reaches 0.2 but when it reach 0.2 I was then told no one would see me until it reached 0.3 which if frustrating.

My concern is that with the BRCA2 gene, when The C-word decides to do something it moves quickly, I would like to know now where it is and some thinking on what to do. Out of interest Chris what hspital are you treated at.

Really appriciate your note, stay strong.

Edited by member 14 Nov 2025 at 09:34 | Reason: Not specified

User

Posted 14 Nov 2025 at 21:12

Northstar, my treatment has been between the NHS and private in Nottingham.The detection levels does vary from hospital to hospital.

Thanks Chris

User

Posted 15 Nov 2025 at 17:23

North Star, like so many other things, this is geography dependent, or so it seems.

My history:

PSA 7.9 in March 2024

Gleason 7(4+3), T3a, M0,N0

RARP in August 2024

Histology raised to T3a+

Post operation PSA was<0.1 then three times 0.1, then most recently 0.2.

My local hospital intervenes immediately at 0.2 and I’m now expecting to start SRT in early January 2026.

SABR is available at my local hospital(James Cook) but I was told there’s nothing big enough to aim at.

Not happy with the situation but reassured at the action being taken.
How much does this vary with locations. I’ve already noticed that pad supply seems to be a local variable.

User

Posted 16 Nov 2025 at 21:39

Hi Northstar,

You could discuss your situation with your GP and ask her/him to refer your case to the Marsden for an opinion. It may be that the Marsden would want to wait until your PSA rose to a certain level before doing a scan or they might suggest getting the scan done where you had your treatment so it can be 'called over' to them. It can take a long time to get an opinion from the Marsden because they get so many referalls. (I am not sure whether this is possible under the NHS as there may be some incompatbility between the Scottish and English NHS and the way the system operates. I was lucky in-so-much as I lived near the Sutton Branch of the Royal Marsden and it was they who referred me to UCLH for HIFU.

Barry

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