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The common decisions decisions question

User
Posted 03 Apr 2025 at 09:50
Hi All

Have been browsing here for a fair few weeks now and have learnt so much from all your own journeys so thank you for that

My story is doctors appointment on Christmas Eve for pains in side, turned out to be shingles , unbeknown to me the Doctor did a PSA test which was elevated at 4.8 , MRI followed that showed 2 abnormalities , one I think was classed as Pyrad 3 and one was 4, biopsy followed which showed the 3 was benign but 4 was cancer, so classed as 3+4=7 , T2aNOMO , no spread and fully contained in one side of prostrate, 2 cores out of 26 showed cancer @ 15%

I have just turned 56 and had no symptoms so am very glad that the doctor did the test, funny enough I called him after to ask if there was a specific reason for him doing the test but he said no and couldn’t actually recall why he did it

I think after diagnosis I was very naive and presumed when they said it was low grade that treatment would be minimal , obviously not , treatment options offered as you all will be familiar with were the normal AS, RP or RT which completely shocked me

So I have been for the past month driving myself mad investigating the best options which for me change by the hour

First thoughts were , IM not having Prostatectomy no matter what

AS worries me as it’s not going to go away but maybe short term to give me time to make a firm decision

HIFU seemed to be top of my agenda for minimal side effects but since then it seems not great long term success rates and really don’t want to have to repeat surgery or risk damaging the prostrate if it does need to come out

Ruled out RT and HT because of the time scale and side effects along with the fact that again if it comes back you can’t have the surgery

The one thing that I am interested in though now is SABR which sounds encouraging

But overall it seems to come back to Surgery the very one that I was adamant I wouldn’t have , from reading stories on here it seems that there are a few different types of the robotic surgery, Single Port Entry, Neuro Safe, Rezeous Sparing , also seems to be a lot of advice to choose your surgeon carefully , I have narrowed down surgeons to about 4 now and I think some on here might have used the same but I see no names have been mentioned , is it against the rules on here to reccomended surgeons ? Anyway 2 of the favourites our Professors connected to London Bridge ,

I am fortunate that I can consider private options for the surgery if I go down that route

Was hoping for any thoughts, advice on the above please ?

Thanks and best wishes to you all

Nick

User
Posted 03 Apr 2025 at 10:33

Hi Nick.

I'm sorry that you've had to join the Club, but welcome to the forum

This site does not allow surgeons to be named.

I often use prostate matters for more specific information.

https://prostatematters.co.uk/

If you're considering surgery this video my help you.

https://drive.google.com/file/d/1fyYTLZpxnB9HaR7O4xQ5Ff58Pj4Cn6ZB/view

Best of luck mate.

PS: If I was in your position, I'd definitely consider active surveillance, but I'm a bit of a gambler. 🙂

 

Edited by member 03 Apr 2025 at 10:36  | Reason: Additional text

User
Posted 04 Apr 2025 at 17:53

Hi Nick

Sorry that you find yourself here.

Quick synopsis, aged 64 Pirad 4, T2bN0M0, Gleason 3+4 & option of private treatment so apart from our ages, pretty similar to you. Also offered all 3 choices. Recommended was AS, thought about this, read as much as I could and If you've been reading the Forum you'll know that I've a friend who's AS failed in year 3 and who's now T4. Chatted with him on a number of times and tbh it was a no brainer when he said "Have it out, I wish I had". As it happens my daughter used to work for a medical devices company and sold attachments for the previous generation of da Vinci robots. She attended a considerable number of RARP's in London and gave me a list of 3 surgeons in order of how they were considered by the attending medics during operations. I went to see her top one at London Bridge who's not a professor but who is using the SP robot and after a family discussion decided on him as he was happy to proceed with the SP robot, nerve sparing with neurosafe. My proceedure takes place on 08/04. Others here have had both very successful and not so successful (but still OK) experiences with AS and provided you make sure the monitoring is super efficient it can be a perfectly acceptable route. For me though a follow up message from my friend was "you can't get prostate cancer if you haven't got a prostate" and that did it. (I realise that technically that's not true given that microscopic cells can be missed but I get the jist). Good luck with your decision, it's not easy.

User
Posted 05 Apr 2025 at 13:49

Thank you mate and also noted thoughts on AS , for me I think it’s more of a case of just having time and not rushing into decision while I try to digest as much as I can on treatment options , as I mention I have only just heard about SABR which is interesting but if I go down the full surgery route just want to ensure I am giving myself the best fighting chance with Surgeon and best technique

all the best mate for next week 👍

Show Most Thanked Posts
User
Posted 03 Apr 2025 at 10:33

Hi Nick.

I'm sorry that you've had to join the Club, but welcome to the forum

This site does not allow surgeons to be named.

I often use prostate matters for more specific information.

https://prostatematters.co.uk/

If you're considering surgery this video my help you.

https://drive.google.com/file/d/1fyYTLZpxnB9HaR7O4xQ5Ff58Pj4Cn6ZB/view

Best of luck mate.

PS: If I was in your position, I'd definitely consider active surveillance, but I'm a bit of a gambler. 🙂

 

Edited by member 03 Apr 2025 at 10:36  | Reason: Additional text

User
Posted 03 Apr 2025 at 10:57

Hi Adrian thanks for reply and info mate it’s much appreciated

funny enough I have seen you post the video before and it has already helped me narrow my surgeon choices down, he looks to be a very wise man 😉👍

I have a NHS appointment next week with a surgeon so will be asking him about how long AS could be used for in my circumstances, it’s weird as PSA in Dec was 4.8, was tested again last week and it dropped to 4.3 👍

 

User
Posted 03 Apr 2025 at 11:51
Hi Rob thanks so much for advice mate, unfortunately It won’t let me reply by PM as I think I need more posts but it’s much appreciated 👍
User
Posted 04 Apr 2025 at 16:09

Thanks for this Ian.

Originally Posted by: Online Community Member

Hi Nick.

I'm sorry that you've had to join the Club, but welcome to the forum

This site does not allow surgeons to be named.

I often use prostate matters for more specific information.

https://prostatematters.co.uk/

If you're considering surgery this video my help you.

https://drive.google.com/file/d/1fyYTLZpxnB9HaR7O4xQ5Ff58Pj4Cn6ZB/view

Best of luck mate.

PS: If I was in your position, I'd definitely consider active surveillance, but I'm a bit of a gambler. 🙂

 

User
Posted 04 Apr 2025 at 17:53

Hi Nick

Sorry that you find yourself here.

Quick synopsis, aged 64 Pirad 4, T2bN0M0, Gleason 3+4 & option of private treatment so apart from our ages, pretty similar to you. Also offered all 3 choices. Recommended was AS, thought about this, read as much as I could and If you've been reading the Forum you'll know that I've a friend who's AS failed in year 3 and who's now T4. Chatted with him on a number of times and tbh it was a no brainer when he said "Have it out, I wish I had". As it happens my daughter used to work for a medical devices company and sold attachments for the previous generation of da Vinci robots. She attended a considerable number of RARP's in London and gave me a list of 3 surgeons in order of how they were considered by the attending medics during operations. I went to see her top one at London Bridge who's not a professor but who is using the SP robot and after a family discussion decided on him as he was happy to proceed with the SP robot, nerve sparing with neurosafe. My proceedure takes place on 08/04. Others here have had both very successful and not so successful (but still OK) experiences with AS and provided you make sure the monitoring is super efficient it can be a perfectly acceptable route. For me though a follow up message from my friend was "you can't get prostate cancer if you haven't got a prostate" and that did it. (I realise that technically that's not true given that microscopic cells can be missed but I get the jist). Good luck with your decision, it's not easy.

User
Posted 05 Apr 2025 at 13:49

Thank you mate and also noted thoughts on AS , for me I think it’s more of a case of just having time and not rushing into decision while I try to digest as much as I can on treatment options , as I mention I have only just heard about SABR which is interesting but if I go down the full surgery route just want to ensure I am giving myself the best fighting chance with Surgeon and best technique

all the best mate for next week 👍

 
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