8 years 8 months ago - 8 years 8 months ago#37944by mmc
They will have you do kegels and other pelvic floor muscle exercises and those muscles are what you would use to control going and not going. I get a feeling of fullness so I know when I need to go. Not the same as a bladder but one knows.
thanks, mike. now, more questions: i think the cleveland site explains the different diversions pretty well -- but what it didn't say about the neo is how you control or stop the flow from happening. since the neo has no muscles, and anyway there are no nerves for voluntary control, what keeps it from draining all the time?
8 years 8 months ago - 8 years 8 months ago#37942by mmc
Do get to Memorial Sloan for a 2nd opinion.
I'm kind of surprised that you hadn't heard about cystectomy already since you were first diagnosed 20 months ago, but it is what it is.
Now that you've seen the info from Cleveland Clinic about diversions you have a sense for the mechanics of the options.
People on this site have had cystectomies and we're doing just fine. There are folks here who have had each of the different options so we can answer questions.
I have a neobladder and have had it since October 2008. You don't always get a choice on the diversion because it depends on what they find when they are in there but you still want to give the surgeon your preference on which you would rather have.
It's pretty scary when you first hear about it, but it is not nearly as scary once you recover from surgery. WAY better than dead! I'm actually better off without mine because I had prostate issues that I no longer have.
You may or may not need a cystectomy. Get to MSK for that 2nd opinion to find out. If they think you do, ask them questions. Some people may not be ready to even hear about it right away so they may not have said anything because when they mentioned cystectomy you may have looked like a deer in the headlights. In any case, make a list of questions you want answered and write down the answers when you discuss it with them.
Also, ask questions here. We are happy to help you.
PS: Nothing I can't do now that I could do before getting my bladder out. Golf, skiing, scuba diving, etc. I get to do more without breaks to pee because I don't have to go so often.
Well if you haven't already..i'd hop on the train and go into NYC and Memorial Sloan where they have a team of top uro/oncologist surgeons that do nothing but bladder cancer...not to mention a top pathological team. Have you had a second opinion?
Dr. Herr top man...not very talkative but a heck of a surgeon
Dr. Bochner.....huge caseload but very talkative and spends lots of time
Just check out their backgrounds and see who fits you.
oh, right. i'm male, 62, live in connecticut. i've had two TURBs and 15 BCGs and several "scopes," the next one scheduled for the end of the month, with the plan to look around and take samples for biopsy, then come up with a plan.