Hi DocMike sorry you are here but welcome to our community. As for the Bladder Sparing Protocal, I was part of a clinical trial refining it at Massachusetts General Hospital where it was developed. I went through twenty trips to infusion and forty to radiation. I had a reacurrance with in months of finishing tried BCG again reacurrance and went to Radical Cystectomy. I flew to Chicago and Dr. Gary Steinberg who specializes in urinary reconstruction following radiation could do the surgery, I have a umbilical Indiana Pouch. Of course surgery as you know can be more complicated following radiation. Almost all of the residual after effects I have are related to the radiation and not the Cystectomy. The interesting thing about bladder sparing is that the success statistics are done showing those who are successful by the end of the protocal. By that standard I was counted as a success, I would love to see what it was at a year, five and so on. I would never try to dissuade anyone from from doing bladder sparing but I would suggest if that was your choice to find a bladder cancer center of excellence if that is your choice to maximize your chances of success. If you want suggestion just post you state and I am sure you will get suggestions.
As for being active with a bag, we have had bikers, runners and mountain climbers over the years. The bag itself should not be a problem once you find the one that works for you ask you Urologist for a referral to an Ostomy nurse they can be invaluable. I guess in some ways only you can decide what to do you know what your general condition was before this. It take a while to heal and come back to normal following Cystectomy. It takes walking as much as you can once they tell you can. It takes getting to the gym and working hard as soon as they tell you you can. I would have a discussion with you Urological surgeon and get thier take on the question.
I hope this helped a bit and please keep us updated and let us know if you have questions.
