I have noticed that no one has replied to your request for the list of doctors...Probably because the last post in this thread was over five years ago.
I assume you are looking for doctors with experience in neobladders for women? I am not an expert in this area, but from what I have heard, successful neobladders for women are few and far between. Probably you should consult with someone at a place such as Johns Hopkins or Univ. of Chicago and get the current status of this surgery.
Good luck to you.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
I just got my neobladder on 4/25/07 and have been VERY happy with it so far. I have only had one instance of nighttime leakage but am dealing with the hypercontinence issue. I'm only 38 and very active with horseback riding and boating, so I was concerned with the functionality and asthetics of anything other than the Studer Pouch I have. I did not have the DeVinci laproscopic procedure but the 'ol fashion surgeon performed procedure at M. D. Anderson Cancer Center in Houston. My doctor, Dr. Barton Grossman, was wonderful about making the opening as small as possible (only from my pubic bone to the bellybutton) and talking about all the pro's and con's beforehand. If you still have any questions or if there is anything I can help with, please e-mail me at firstname.lastname@example.org.
Hi Dixie...i love Dr. Shoenberg too....he consulted with me by phone after i emailed him...he was so helpful...he was partially responsible for giving me a list of the top docs in the field besides himself. I also read his book. At that time (4yrs ago) he really wasn't recommending the neobladder for women as they hadn't done that many for one and not too many success cases truthfully....hypecontinence being the one big problem and ensuing backup and kidney problems. He was pioneering nerve sparing techniques at the time and also not necessarily taking everything they could see in a woman..ie..uturus, ovaries, vaginal wall...etc. The doctor i spoke to at Indiana University also said the stats didn't hold up that this cancer necessarily spreads to those organs so if you're in your 30's they won't take them depending on the stage and grade of the tumor of course and where its located. I'd like to think it was 60% now...i'll have to do the research...because it was about 33% back then.......My how time flies!!! But i do love the idea of the DaVinci Robot...the playing field is so much larger for the surgeon.
I did so much research before my surgery to be honest I am not sure. I think it was in the binder that Dr. Schoenberger had given me when I went in for my first visit with him. He gives you a notebook explaining the three different diversions available, also included are a couple of articles with stats of re-occurences over a ten year period depending on the stage and grade. Also there is a list of men and women with their ages, what urinary device they had done, when they had it done with their phone numbers so you could contact them. I think there were over 100 names. In the notebook it also tells you about the prep before the surgery. I remember Dr. Schoenberg telling me since I was considered young for this surgery I would be more likely to come out of surgery being hyper-continent if anything with the neobladder. I was really impressed with this notebook that he gave me. Out of six different hospitals Johns Hopkins was the only one to give me so much information which half of the hospitals wouldn't give me even after I asked for it. He also gave me a book that he wrote on Bladder Cancer it might have been in that too. I am not sure. Now these stats were about 1 1/2 years ago. They could of changed by now which I would think for the better.
They also gave me a binder post-op explaining everything in detail what I would or could experience. That was like my bible for the first four weeks. I think almost everything in the binder happened to me. It did answer most of my questions that I had after surgery.
Sorry I couldn't be more specific. I read so much in such a short time it's hard to remember it all.