Colleen
Thank you for including me in this discussion so that I may perhaps become more aware of other people's experiences as well.
It has been over 2 years since I got my neo bladder. I was originally diagnosed as t1 level but after further examination by Merke I was classified as T2. My doctor at Mayo says early stage T2 even though he judged me t1 but it was highly aggressive and after much discussion we decided to opt for the neo bladder.
So after 2 years I could report that I feel really good all in all except I have ongoing incontinence problems especially at night with mucus discharge during the day of varying levels. I am just now starting to get away from diapers and just use protective underwear during the day but still wearing diapers at night. However in the big scheme of life I judge this to be acceptable and I'm grateful that I don't have to wear a bag and I'm still alive and happy.
I have had some experiences with other people who have this ongoing treatment who have decided to try to live with the original bladder. In my case I had talked to my doctor and asked him his advice and he made it sound like I would probably have to get a bladder removal eventually even with the treatments. I know many people have had reoccurrences even with the BCG treatment. However my doctor called the bladder removal the "definitive solution" and I feel better just getting the whole thing removed along with my prostate gland. In my specific case I simply did not want to have to go back to the hospital that often any other issue is I rather have this type of operation earlier than later as I'm not getting any younger. If I was able to conquer my incontinence problem I would call it a total win getting the whole thing removed and then would have to wonder why would I want to live with my original bladder and the cancer risk. Of course we all need to make our own decisions based on our own circumstances but that is my two cents worth of opinion.