hello - sorry to hear about your diagnosis. my husband and i have just finished going through all that you're going through right now - we finished this summer. we went to two different doctors for opinions - one from dr. uzzo at fox chase (we live about 15 minutes from there) and the other from dr. mark schoenberg at hopkins.
dr. uzzo had done 150 radical cysto-prostatectomies as of when we went to see him this summer. dr. schoenberg had done 541 as of this summer. that's a gigantic difference, in my book. also, a good friend of ours is an oncologist. we asked his advice on our decision, so he read all the studies for us to help us decide, and he liked the hopkins model better than the fox chase one. this friend went to harvard undergrad, and cornell med. school, and we think he is absolutely brilliant.
uzzo wanted to remove the bladder, prostate, etc., in 3 weeks from the day we went to see him. he felt that since there was no evidence of spread of the cancer on all the scans my husband had, he did NOT want to give him chemo because having the chemo would only increase his survival chances about 5%. well, 5% is a very meaningful number if you happen to be in that 5%. yes, the chemo sucks. but suppose there's ONE stray cancer cell out there, and it spreads. then you're screwed.
when we went to schoenberg, he said that in 2001 they used to just do the RC, and if the cancer had spread, then they would do chemo afterwards. well, guess what. it's now 2007, and things have changed. now they do chemo first. from what i hear on this forum from all the people who have had the RC, the recovery afterwards is brutal. add chemo to that mix, and it's not a happy time. also, as i said, our friend the oncologist agreed with schoenberg. and one more thing - schoenberg said having the chemo first increases your survival chances by 10-15%. so my advice for you would be to go to hopkins. uzzo is good; schoenberg is better. also he's doing more cutting-edge work. fox chase is a factory. and afterwards, big deal if you have to drive to baltimore. isn't your life worth that drive? once we're done the first maybe 6 months (i'm guessing) after surgery, then we can go to our local urologist for follow-up care. schoenberg already spoke to our urologist about it.
one more thing. dr. uzzo gave me two names of former patients to call to ask about their experience. i only called one. we were interested in the neobladder. the man that uzzo gave me to call wears diapers every single night, and wets himself 6 nights out of 7. also, he hasn't even tried to have sex yet, and his surgery was 2 years ago. you can't help but wonder about a doctor who gives you this guy as one of his two referrals.
then schoenberg - he gave us THREE PAGES of names to call. big difference. one of the names had his neobladder about 5 years ago. he hasn't had any problems at all with it - can have sex, is NOT incontinent, etc. however, he was going the next day for an exploratory surgery because in one of his follow-up scans, they thought they saw kidney cancer. now i don't know if this relates to the BC or not, but i asked him if he had had chemo first, and he said NO. so, one more reason to get the chemo.
so, kudos to you for accepting that you MUST get the RC. you can do the chemo in your local hospital. the protocol is the same everywhere. we met with dr. vaughn down at univ. of penna. hospital. he's the big bladder oncologist. we live 5 minutes from a cancer center at Abington hospital, our local hospital. vaughn said ABSOLUTELY we can go to the local hospital for chemo. it's "bread and butter oncology that any decent community hospital oncologist can do." however, for the surgery, you MUST give yourself the absolute best odds, and schoenberg is one of the best. my husband is 58, never smoked, and was in perfect health till he got the bladder cancer, and schoenberg is our choice of surgeon. best of luck to you.
eileen, mike's wife
