KC2009,
Welcome. Take the deep breath as all on this board share your concerns. Some have had to have cystectomies, some not. There are many success stories as this is treatable and beatable. I am one of the fortunate that haven't had to.
1st, as with any serious issue along life's journey it is one day at a time. You do have some time to research and plan the next step. I am linking (our hyperlink doesn't highlight so copy and paste) a good read of the 3 main diversions:
my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction--diversion
Along those lines. You want a real expert on this. A URO that has been doing these for several years and at the rate of 25-35+ a year of that particular diversion. It is rigorous. You want a major center that sees a lot of bladder cancer....so many practices do a lot of prostate issues. This IS different. I understand Emory in Atlanta is very good. There are many that post here that have one or the other and hopefully some will see whatever you have chosen and can answer specific questions. I am also attaching a questionnaire (see below) that someone posted years ago. Not all of the questions are applicable to each situation so pick and choose.
Please keep posting as questions arise. We all learn from each other.