I have had my 5th TURBT this month with the result that whilst nothing was visible the biopsies taken show G3 pT1. My last BCG treatment was dose 15 in September 2023 with recurrence noted in November 2023 and had two TURBTs in December 2023 and February 2024 where it was G2/3 pT1 but supposedly all removed and MDT recommendation of RC.
Was being considered for heated mitomycin treatment as an alternative to RC, hence the TURBT in May, but the latest MDT decision is that this would be sub-optimal and they are again recommending RC.
I am seeing the consultant tomorrow to discuss but thinking if I go ahead with it then neo bladder would be my best option rather than press for any other bladder sparing option and wondered if anyone else has gone through a similar journey and what helped you decide.
Very concerned about the impact of the RC on everything else as I'm 57 and wanting to maintain a sex life so any personal experience people are willing to share I would greatly appreciate.
Hi Andy, I have not had a RC myself, but may quite conceivably be faced with that choice myself in the not too distant. Of course you wish to retain your sex life. You may wish to consider robotic surgery c/w nerve sparing surgery. Just a thought. Wishing you all the best, Leo
Thanks Leo, will be asking the consultant what my options are for sure but looking likely, with now three MDTs saying cystectomy is the best route for me, that I will probably have to go that way. Fingers crossed any nerve or prostate sparing will work
The oncologists usually recommend RC for hi grade, but it’s an MDT position. The decision is Entirely yours, not theirs. You will know what to do when the time comes. People don’t talk a huge amount about sexual health on there but clearly it’s a vital dimension, young man.
Hi Pompey365, I was a couple of years younger than you when I had my RC and Neobladder in 2020.
My Neo is amazing. Pretty much exactly the same as my old bladder. No incontinence night or day. And nerve sparing procedure worked well and apart from no ejaculation due to prostate removal, my sex life is as before.
Maybe I was lucky, but can only speak from my personal experience.
Would definitely recommend life with a Neobladder, but I know from this group that many would equally recommend stomas.
Thing is we are all different, so what’s best and worked for me wouldn’t be right for someone else.
good luck tomorrow, and if you had any specific questions, just ask.
