18 months post RALP

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I have previously posted my journey to surgery and subsequent recovery. I was so grateful for the support prior to diagnosis and after but thought it appropriate to do an update. 

Waterworks are generally good. Bladder capacity isn't great and may wake once or twice a night. Beer seems to give a better sleep! ED can be intrusive to fulfilling impulsive thoughts but one finds a way. I've tried injections but didn't really get on with them. Was on 20mg of a caverject alternative but it appeared to fill the tank only halfway. The pump works best, is less uncomfortable and we have got used to it. I'm still on cialis 5mg daily and find the pump more effective in the afternoon than mornings. 

My operation was August 2024 and PSA was 0.05 6.weeks post op.  Adenocarcinoma, P2t2c, 4+3, with margins clear. It has unfortunately been rising gradually every 3 months to 0.12 this month. This was a jump from 0.09 in December 2025.  My cancer nurse has been concerned and advised I'll be called in for scans. I've been thinking for a while that my trajectory will probably lead to some salvage rt but disappointing to be approaching it. 

I'm conscious many have gone through the same and have a belief the long term outcomes are equivalent to the original surgical approach. It is what is but not looking forwards to holding a full bladder for any length of time! 

A question though: given the PSA is still below 0.2 is there a likelihood of any intervention? Thanks folks. 

  • Had prostatectomy March 24. After initial undetectable psa, it rose steadily to 0.07 July 25, Oncologist recommended early intervention (salvage radiotherapy) as it works better when initiated at lower psa. I had salvage without HT . HT was recommended but I declined as my view was if salvage was unsuccessful I would be on long term HT. Salvage radiotherapy has reduced my psa to undetectable,  oncologist is optimistic of durable control. So that's my experience hope it helps. S 

  • Thanks for that pal. Much appreciated. 

  • Hello  

    I am so sorry to read of your rising PSA. After surgery intervention is normally after 3 consecutive rises or a rise to 0.2 or more. This is the general rule of thumb - but all NHS Trusts work to their own rules.

    As for Radiotherapy - not all prostate radiotherapy is empty bowel - full bladder. Some hospital trusts do empty bowel empty bladder (mine at The Christie Oldham was empty bladder!).

    I wish you well moving forward.

    Best wishes - Brian.

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  • I'm just wandering what the process was for you after they responded to the subsequent rises? I had 5 increases before I had a conversation which has triggered a response. I must admit I hadn't realised the trigger "should" be 3. Did you have scans prior to the oncologist? 

    Thanks again S. 

  • Hi, I don't think there is a hard and fast rule regarding number of consecutive rises but 3 seems to be fairly standard. The process was 3 rises from 0.03 to 0.07, referral from urologist to oncologist. Oncologist recommended early intervention,  CT scan and MRI done showing nowt. Disease is microscopic at these numbers. Short delay from late July to October to allow me to enjoy summer early autumn. PSA prior to commencing radiotherapy had jumped to 0.14 so time to act. As I said earlier I declined HT but that was me throwing the dice a bit. I hope I have answered your query , if not come back to me. All of above is obviously my own experiences and views, I have no medical training . S 

  • Thanks for that information. I'm not keen on HT either but conscious there may be a gap between now and treatment. I have an appointment in 2 weeks so will get a better sense of direction then. 

  • Let us know how you get on. S 

  • I had a similar diagnosis in July 2024 but elected to have HDR Brachy/RT/HT. Didn’t like the idea of surgery after extensive research and several opinions across several spectrums. I’m now 8 months post HT (12 month duration) with waterworks and sexual function all good and very low PSA as I still have a prostate. Yes, you get side effects with RT but manageable. I had HT as well as it is often recommended to provide potentially a more effective outcome. So far so good. Best wishes to all.

  • Hi.   What was your post op histology regarding margins etc.    how many undetectable did you have before rise.   Thanks Simon 

  • Post op histology 4/3 . Negative margins.  Just 1 undetectable 3 months post op <0.03, 6 months later , 0.03, November '24.