Hi again- I was on a couple of weeks ago and you all were very helpful. At the time, we were waiting for my husband to have his biopsy. He had that done under general anesthesia last Monday. They put Mitomycin in at that time. He had several rounds of BCG and then Mitomycin back between 1998-2002 and had not had a recurrence after those years. His last checkup was in Sept. 2010 and they did a biopsy in the office during the scope of one area but it came back as just "imflammation". Well, now that is Grade 3- he only went back to the Dr. early because of some mild burning with urination after exercise. The FISH test came back a few weeks ago with atypical cells. We were so hoping this would just be very superficial and non-agressive. However, the Dr. kept repeating that his results were "very worrisome". Mainly because she did some random biopsies of just different areas of the bladder. One of those areas that looked "completely normal" came back as carcinoma in situ, which she said can metastasize easily. She felt that the combination of that, the fact that the area looked so normal and the Grade 3 area as well was very concerning. So in 3 weeks, she wants him to come in weekly to have BCG instilled and to do that for 6 weeks. After 6 weeks, she wants to wait 3 months and then do another biopsy under general again (end of September) to see what has changed. If things have not changed significantly, she would recommend cystectomy. As my husband put it, "that was all a bit of a left hook", as we walked out and I was trying very hard not to cry. I know Mike had suggested a Dr. in Denver- Shandra Wilson. My tendency is to start gathering information. His Dr. said that there isn't anything yet like an artificial bladder, but I thought there was. She talked about either having the bag or another method where people have to use a catheter to remove the urine from an internal "bladder". Now I need a tutorial on all that, although we are trying not to jump to that conclusion. However, I am definitely the information gatherer in the house and it also helps me to focus and be strong- to have something to do...
Are there places to particularly seek out in the case he needs that? My Dad went to MD Anderson for many years in the 80s-90s for lymphoma and my sister and husband live 2 hours away. Is that a key place? Mayo? Denver's University hospital? We like his Dr. very much, but would want the best .
Thanks so much for the place to get support. I really appreciate it!
Bambi