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
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
New to site.
I am 66, male. I have Bladder Cancer. All Treatment at Lahey Clinic in Burlington MA. TURBT last summer, BCG sessions in the fall, CIS everywhere. Bladder must go.
I have the choice of a neobladder or stoma.
I was hoping to find data or more info on success rates, happiness rating of each, (if there is such a thing) or rates of complications, and what are they...mostly with the neobladder. there is plenty of information on bags and stomas. i wanted to find more on neobladders.
I sat in on an Ostomy support group last week to learn what it would be like to have a Urosotomy. I would like to know more about life with a neobladder.