Decisions, decisions ......

Hi Barney, sorry to ‘meet’ you under such circumstances but it sounds as if, once everyone got their act together, everything has happened very quickly. In that sense, you have, I think benefited so much better than a lot of us posting here who have met with very slow passage through the diagnostics and in waiting for results.

my husband was diagnosed in the autumn of 2022, aged 75and at exactly the same stage as you with the same Gleason and the same treatment pathway with curative intent. I wish you all the very best with the treatment!

out of interest, I am wondering how long they want you to continue with HT. every time we spoke to someone about this we were given a different length of time - 6 mts, 18 mts, 24 mts and 36 mts! We were told there is evidence for low risk and high risk but not for intermediate to high into which they slotted my husband! He did 18 months in the end, finishing in May 2024

• Have you looked at hifu someone mentioned it to me the other day 

Hi Barney ,

Sorry that you've had a recent diagnosis. Your diagnosis has been at same time as my husbands. 

He's 59. PSA was 11.1 Gleason score of  4/4 -8. T4( due to high Gleason score) N0M0

He was diagnosed on 13th Dec with pc  following an MRI, biopsies and bone scan . They initially said it was confined to the prostate but on 20th Dec they said it has just started to spread to the neck of the bladder. His treatment is with curative intention.  He started HT tablets 23rd Dec and had 6 month injection on 3rd Jan. He will be on HR for 2 years.

He too has been offered PACE NODES trial but he's not too sure and may opt for the standard 20 radiotherapy sessions. We're in Merseyside and waiting for a response to questions about the trial. What's your view on the trial? 

Best of luck with your treatment  

Cathy 

Hi BarneyM In my opinion - you’ve made the right decision.  AW

Hi Sunburst22 thanks for your post, although I was confused when you said that your OH is T4N0M0.

As for trials, we all benefit from brave souls who have advanced science through this process.  If it were me, I would like to know more about the 3 options (conventional & 2 x trial) and the known success rates for each before going ahead.  Also what is plan B if the option you choose stops working.  Armed with this, then I think the decision is yours. Feel free to ask anything, the team on here although not medically qualified are brilliant.  Good luck, David

Hello Worriedwife. Thanks for your message. I've just started taking the preparation tablets to prevent a "flare" when I receive the first HT injection next Friday. The only stated total time for my prescribed HT (that I've seen so far) is "up to 24 months". The actual RT treatment obviously overlaps that period at some point. I don't yet know how long it will be before my RT starts.
What I realise that I'm not clear about (and shall now add to my ever lengthening list of questions) is whether the HT treatment period remains at up to 2 years from the first injection or from say, the end of the RT?
Thanks for prompting the question.

Hello BarneyM  

HT is normally xx months from the date the treatment starts. The HT puts the cancer to sleep by depriving it of its food, testosterone. Once it’s asleep the Radiotherapy kills it off. The norm for RT is 4 to 6 months after HT starts to give it time to work.

Being a T3a I am surprised you only have 2 years, I assume this is due to being a lowish Gleason Score. I would think that your RT will have to wait until after your TURP operation. I am aware in some areas the TURP waiting list is over 12 months so you may need to apply some pressure to work your way up the list.

Best wishes - Brian.

Hello Cathy.

I imagine you've been given the 16 page A4 pamphlet describing the trial. The PACE NODES is a Phase 3 trial. That's comforting I suppose, in that it is not too "out there" experimentally speaking. It is also just the latest of similar trials, so there are statistics and data available though not yet on this one specifically.
As it's randomised, you don't know to which group you'll be assigned until you accept a place. I don't how I will feel if I am put in the "Prostate Only" group. I kind of think that if I'm going for a trial treatment, I want the "whole 9 yards". Having said that, if you go for the standard 20 fraction treatments, you're not getting the pelvic lymph node bit anyway.

I do like the idea of 5 session over 2 weeks rather than 20 over 4 weeks. Just generally easier to manage and less disruptive, maybe? Although you receive a higher dosage "zap" per session, I'd like to believe that there may be less "collateral damage" due to a) fewer treatment sessions, b) lower cumulative effects, maybe? and c) more accurate targetting of the cancer cells?
The last one also brings up the targetting method that your hospital uses. I don't know mine yet as it's a conversation I've yet to have. If it's the gold markers, then it's another "uncomfortable" procedure to endure but hey, we have to keep our eyes on the prize!

As I've realised and mentioned elsewhere, the potential range of side effects seem to be much the same whichever way you choose to go. However, I do like the idea that because you are on a trial, you get more check ups, follow ups and monitoring etc.

One final aspect (and perhaps not talked about so much) is what type of personality your husband is in general life. It's probably going to tilt him in a particular direction even when the logic or evidence of his situation doesn't necessarily give clear direction.

Whatever, you decide, I hope it works out well for both of you.

Good luck.

Thanks again for you helpful input.

I'm aware that the Oncology team would want at least 12 weeks to elapse after a TURP procedure. What I don't know yet is if I definitely need the TURP (highly likely - flow test next Thursday) and of course, if so, what the waiting list might be.

My consultant surgeon seems to have a reputation for pushing things along and demanding results from other departments as quickly as possible. I can only hope that the same applies to her own operations.

Thanks again.