i would recommend a second opinion at MD Anderson. At least they use narrow band imaging there which would have detected the CIS. Thats a sneaky one and local uro's do not have the toys the big guns have. Drs Dinney, Grossman or Kamat are tops
just click on their names to get their bio's.
Your husband should have a CT scan, blood work, and go from there and you want to be sure of the staging.
You want to be at a place where they do lots of bladder cancer surgery. Shandra Wilson is well known and probably the busiest surgeon at U.of Colorado so if you want to stay closer to home she's a good bet for a second opinion.
But do not hesitate ...do this before any more rounds of BCG..you must have correct staging.
wow Bambi! What a HUGE lot of bad news so suddenly. I'm sorry for the wrong turn this has been for your family. But you are doing the right thing in asking questions and inquiring about alternative drs. and treatments. My BC was non-invasive (sorry I don't know the grade) and my bladder was removed and I have an indiana pouch. I didn't get a choice to try BCG because my cancer was so far along. I'm glad things went the way they did for me, I wanted the cancer out!!! Gone from my body.
There is very limited work on "growing" new bladders, most of it being done in oregon (i think), and most of it is for children. The "guy" option is the neo-bladder and the gentlemen on this site all seem to become accostomed and at peace with this option. It obviously isn't ideal (for any of us), but very workable into a normal life.
Keep reading and asking questions. I'm rather new here, but there are experts here with immeasurable knowledge about hospitals, doctors, treatments, recovery...
Start a notebook for gathering info, taking notes, etc.
Pat will probably read your post and give you a name and hospital for thebest in your area.
Good luck and we'll keep you both in our prayers and thoughts.
3 years UTIs
Indiana Pouch - July 2010
Pulmonary Met. - May 2011
Chemo started June 2011
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!