So sorry that you find yourself here....and you do have a lot facing you in the near future! You are very fortunate that you are in a place where you have an "abundance of riches" in the treatment of bladder cancer, however.
First, please remember that if the cancer has not spread beyond the bladder, radical cystectomy (removal of the bladder) is a definite CURE. And many people live full lives without a bladder.
I have not had to face the decisions that you are going to be making, but there is always the thought that someday I might have to, so I have sort of figured out what I might do in your situation. But these are very personal decisions.
Most patients do have the bladder removed; radiation treatment has not always been successful and can lead to surgical complications later if it becomes necessary to remove the bladder later. It is somewhat controversial and is often considered experimental.
As you have probably read, there are three major types of urinary diversions if your bladder is removed. A really good summary of these can be found
my.clevelandclinic.org/health/articles/urinary-reconstruction-and-diversion
Neobladders have not been as successful with women as they are with men, and a good percentage of women who have had them are either incontinent or super-continent and have to cath. This is also the most complex surgery. Our president, Cynthia, has an Indiana pouch and is very happy with it. I am sure that she will probably post here tomorrow. The simplest, of course, is the ileal conduit where urine is collected in a bag outside the body.
Whichever diversion people have, they seem to adapt and live comfortably with it. You want to be sure that whichever you might chose you have a surgeon who is familiar with that diversion and who is experienced in the surgery required.
If you feel that you need a second opinion, Stanford University Medical center is also a great place for bladder cancer treatment.
Please feel free to ask any questions you might have, and someone will be sure to respond! Remember that we are not doctors, but rather people who have been facing bladder cancer head-on!
Best of luck to you
Sara Anne
Topic Author