Gary D. Steinberg, M.D., F.A.C.S.
This is the surgeon I used for my RC, he specializes in salvage RC following radiation amoung other things. Give him a problems and he is happy. He and I get along very well he will answer questions by email and really cares. I have heard people say he has no bedside manner but I adore him. He does three to five RCs a week and knows his buisness.
Mark Schoenberg, M.D.
He is a wonderful human being and one of the top in the country. He will also answer questions by email. He is the author of one of the best books on blc I have ever seen.
Cheryl T. Lee, M.D.
Dr. Lee is one of the few female Uro surgeons to be found in the US. She is entusiastic knowlegable and careing. She is concerned with the situations woman with blc face. She is considered an up and commer in this field. She was also elected as the Bladder Cancer Advocacy Networks chiarperson of its medical advaisory board.
Good luck and let us know how things go.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
From what I've heard from women who've needed to be re-operated upon or who had tough cases such as previous pelvic radiation, the best uro-surgeons for women are John Stein at USC/Norris and Mark Schoenberg at Johns Hopkins. I will ask for more names, but if you are able to have a consult with either of these experts it would be a good place to try and start.
I have been at the Univ. of Michigan...nothing but trouble. I then went to Karamanos and felt confident and cared for ...but when they found the surgery mishap they sent me back to UM where I had 2 stoma revisions.
No one at UM offers me any hope...even though I have not had any cancer re-currences at this time. They seem very embarrassed and attribute my problems to chemo allergy, etc. I think they are afraid I will sue them, and so they say nothing.
I will travel ANYWHERE for someone who can fix my problem. The stoma has not leaked in a while..but the hernia is making it larger which I think will be a serious problem in the future. Only the nurses have helped me and they are the ones who alerted doctors to the various problems, e.g.; leakage, hernia, etc. Any suggestions? Elsie2
Elsie, where are you located, and will your insurance support your moving to a university hospital, or out of state to an institution of excellence? You need a good surgeon not afraid of the challenge. Maybe we could help with a referral.
Elsie....i'm assuming you have an ileal conduit? What part of the country are you in? Unfortunately there are a lot of doctors who don't want to mess with someone elses mishap...i've had it happen to me with a botched mis-carriage. I'm sure we can get you to someone who can figure out this repair......i hope so.......Pat