Welcome to the Forum, Michael. I moved your post to a topic where it is more likely to be seen....you had it under "How to Information" which is more on how to use the Forum.
So sorry to hear that your CIS has gotten out of control. I have not had to have a cystectomy, but I am sure that those who have will be chiming in here.
However, I can give you some advice. From what I understand from those who have been there, a neobladder can be an excellent solution. But it is the most complicated surgery. This means that you MUST have a surgeon who does MANY MANY of these ....not just several a year. The skill of the surgeon, combined with the patient's persistence, makes all the difference. Now is the time to get a second opinion at a place that has real expertise in this. Your entire future depends on it.
You are in Mass., so Boston and Mass General might be a good option. Also, Memorial Sloan Kettering in NYC. I can't stress enough how important this is.
Wishing you all the best
Sara Anne
