Any help or advice

Hi Alan.

I'm sorry that you've had to join the club, but welcome to the forum, mate.

I was 65 years old when in August 2022, I  was diagnosed T3a N0, M0, Gleason 8 (3+5) later upgraded to 9 (4+5). My PSA was only 7.

The MDT recommended radiotherapy and hormone treatment, despite a surgeon saying he was happy to do robotic surgery. I was told by the surgeon that the operation would be non nerving sparing, that I would never get a natural erection again, and that there was a 60% chance of recurrence.

I took the surgery option and had the operation just over two-years ago. 

I had incontinence issues for about 5 months and cannot get a natural erection without the use of Invicorp injections. However, my PSA has remained undetectable. 

I think I made the right decision and I'm more than happy with the outcome. The problem is that individual recoveries seem to vary considerably. 

Whatever you chose, I wish you the best of luck, mate.👍

Edited by member 08 Mar 2025 at 08:08  | Reason: Typo

I am really sorry you found yourself here, just to let you know I was in a similar situation. I was diagnosed six months ago with Gleason 9 t3a no mo. My PSA was lower than yours at 8. I was put to the multidisciplinary team and had conversations with my urologist, surgeon and oncologist. The conversation with the surgeon wasn’t an easy one as I wanted it out however he strongly recommended against as the likelihood was that I would need radiation in addition in the future and didn’t want me having the side effects from the surgery at my age (47). Even at that point I still wanted to have surgery however after discussing with the oncologist took the decision to go with HDR brachytherapy, EBRT and 2 years of hormone treatment. I had the HDR brachytherapy at the end of Jan and completed the RT last week so just coming into the major side effects of fatigue but generally tolerated these quite well. Compared to a lot of people I feel I’ve been lucky (if you can call it that) that I seem to be tolerating the HT quite well and for me this is worse than the brachytherapy and RT. Some very low days and fatigue, loss in muscle mass but not had the hot flushes. I still ponder if I made the correct decision however only time will tell. The major decision to go down this route was as it may have breached the capsule the worry was for micro spread that could develop in the future. For me I thought the MDT knew better than me and I decided to go with that. On a brighter note I’ve seen success stories for both surgery and EBRT in our position. I wish you good luck.

Hi Alan,

I'm in the US. I was diagnosed last May (2024), T3a, psa 12.7. MRI showed "areas of gross extra prostetic extension". Biopsy came back gleason 4+5 (5%) but mostly 4+3. I'm 52 years old and am in good health otherwise. Met with surgeon and radiologist on the same day and surprisingly, BOTH recommended surgery so that's what I went with. During surgery, about 30% of my right nerve bundle was removed. All else was spared. Had catheter for 9 days. Was in the hospital for 3 days. Pain was minimal. Found myself getting winded easily for the first 2 weeks. Had only very minor incontinence for maybe 6-7 weeks and now 100% dry.

Remarkably, despite the partial nerve removal, I have NOT had any ED issues whatsoever. I was able to get a natural full erection the day after catheter removal (though I didn't have full sex for a couple of weeks). Again, I was in good health going into surgery, exercised regularly and had a healthy active sex life which may have helped with my outcome.

My surgery was in August. So far, my psa is undetectable. I'm happy with my results but would not necessarily push anyone to take the surgery route. It is a lot to go through so bottom line, go with whatever treatment you are most comfortable with. Good luck to you.

Mike