I have developed interstitial cystitis from all of the stuff that they've done to me, but other than that, no damage. The IC has been a bit of a nightmare. The symptoms have been terrible, but rescue treatments do wonders for that.
I was treated for nearly 9 years in Sault Ste. Marie, Canada where I originate from. I have since moved to London Ontario and am now getting treatment from the #1 guy at the London Regional Health Sciences Center. He's excellent.
Only once has a cystectomy been mentioned and being that I'm only 42, I didn't really consider that an option to be honest. The dr. has not persisted on that one and with so many other options available these days, I'd much rather take treatment until such time that I no longer have a choice. Of course if it were a necessity, I would remove the bladder to save my life, but I've just not been that bad to be honest. Several years ago, before the first course of BCG, I had managed to grow 12 tumors in 3 months. All CIS. Since then I've never had more than 2 or 3. I have definitely resisted the BCG and was more successful with the Mitomycin although my mouth ended up burnt and full of ulcers and it was quite painful throughout.
I didn't realize that 12 years of this without cystectomy was not the norm. I'm still kicking and doing well, but I sure am dreading 12 treatments in a row in the next couple of weeks. Although the BCG wasn't too terrible, I was achey, sore and dog tired by the end of it all. I've never taken 12 back to back like this before, so I'm naturally worried about what kind of shape I'll be in at the end. Hopefully, the BCG/Interferon mix won't be any harder to tolerate than straight BCG.
Thanks for all of your replies. Your input really helps.
Michelle