A close friend has bladder cancer. I’ve been going with him to visits to the urologist for many months while the urologist has attempted immunotherapy with BCG and diagnostic procedures to locate the source in the urinary tract.
On the last visit, the urologist (who is excellent, highly recommended by my own urological oncology specialist) said it was time to say there was no real alternative to surgery to have the bladder removed, as there is recurrence in the bladder, and carcinoma in situ in the left ureter.
He has been offered the option of having an ileal conduit (part of the small bowel connected to the ureters, with a stoma on the side for a bag) or a neobladder in which a bladder is constructed from the patient’s colon, then connected to the urethra so there is no bag. But there are major difficulties with that approach as well.
I’d like to hear from SF members who have had to make this decision, and find out what affect it has had on their lifestyle.
Obviously this is to try to put some personal experience to the medical literature I can read about choosing between these options.
By the way: on the very plus side, the urologist says there is a 95% chance of CURE with the bladder surgery in my friend’s case.
Again, please don’t suggest seeing another urologist, this one is world-class, and a very caring physician as well.

I have no personal experience to offer, but question the inability to find the source of the malignancy.

That being said, I would likely elect the ileal conduit to be certain that the tumor had been eliminated and then the neobladder procedure assuming that the two were not mutually exclusive. I know its two procedures, but if your friend is a youngish man, it might make life more rewarding down the road.

Best of luck to him for a tough break.

RMD