Bobby, you are a long way from cystectomy, IMHO!! AND, a recurrence of the tumors is no surprise..that is the nature of this beast. I was diagnosed on my first TURB with very low grade papillary. HOWEVER, there were a few places of "irritation" where the pathology came back sort of uncertain, so a couple of weeks later my uro did another TURB with concentration on the uncertain areas, and the results came back..CIS. At that point, I was sure that I knew what I was going to die of!! Talk about depression!
BUT did a lot of reading and consulting on this web site and realized that it was not the end of the road. Had a complete series of BCG with maintenance, and am now 3-years out, so far, cancer free. I do realize that there is a chance it will come back, but also have faith that my urologist is on top of things. Also, he always tells me to "listen to my body" and I now know a few things to watch for.
Yes, smoking is one known contributor to bladder cancer, but lots of people who do NOT smoke get it also. We currently have no way of knowing what actually caused this. Does no good to stew about this.....I was never a smoker, but maybe I should not have married a smoker? Not gotten a degree in an area where I spent hours in labs full of chemicals? Who knows. Can't do anything about that now, anyway.
It IS important to be treated at a good place. I know that Pat has recommendations for San Francisco. Hope she chimes in here!!
Sara Anne