DECISION TIME

Lustron; Very sorry you will need to join the R/C group.That is the bad news. The good news is you can still live a very normal life!!!. I am just a couple years older then you and had my surgery about 18 months ago. No one on here can tell you what surgery is best for you. This site is a great place to learn what you need to know. I can't tell you which surgery I had (neo) but you need to read all you can on this site for your info. I, like you did not do my studying well ahead of time. I though bcg would cure me, I was wrong!!! I didn't know which to choose either. After reading this forum and talking to people that had a neo by my doctor, I chose the neo. Again my experience only. Today it scares the heck out of me when I think I might have chosen anything else. My day to day life is the same now as it was before surgery. I urinate the same. Sex is mostly the same. I don't leak doing the day and very little and seldom at night.
Life for me right now is very good. Was it easy? No. The surgery is not easy. About a week to ten days in hospital. I had pain cause I don't do pain meds well. The first month is hard and painful. From then on I started getting better everyday and kept getting better for over a year. It is not fun, but none of the diversions are. At the point your at there are no easy ways to go. Read all you can on this site, study it till get the info you are comfortable with. Listen very carefully to what Pat has to say. She is the best! Others on here will jump in to to help. If we can do anything for you just ask. Kegals are exercises to help you control a neobladder.
The sooner one starts them the more control of a neobladder one will have. Hope this helps you.
Duke

um, what are kegals?

Well if invasion into the deep detrusor muscle is indicated as it says "present" then you are T2 which is invasive which means get that bladder out of there!
Like i told Katherine you can always get a second pathological opinion by mailing your slides, CT scans to Johns Hopkins who has one of the best pathologists around. See the link on her thread.
They're pretty quick at getting it done.
Too bad they didn't give a location of where the tumor/tumors were as i still don't know why your uro would not advise a neo for you unless she feels you just don't want to mess with leakage and kegals and all the frequent trips to the bathroom and potential catherization!! Indiana Pouch eliminates that but it needs about a month to get trained up to 4 hrs and then as time goes by it pretty much behaves as long as you do...i mean if you drink 8 bottles of beer it will not behave..i know..i tried it once!!
Whatever you decide you will make peace with it eventually. We all have.
pat

these grades are so confusing. my latest report says "transitional cell carcinoma. histologic grade 2-3 / 3. invasion of lamina propria: present. invasion of deep detrusor muscle: present."

lustron..any reason why you cannot go outside of Conn for a second opinion? Insurance? MSK is #8 in Urology and #2 for Cancer and have top specialists for bladder cancer. Yale New Haven ranks at 48th in urology ..doesn't mean they don't have good docs as they do but not sure the amount of bladder cancer they see. I guess just a question you have to ask. Of the uro's on staff Colberg and Foster ranked best but i'm not sure what they see more of...prostate or bladder.
Why your present uro is steering you away from a neo i don't know. Perhaps the tumor is near the urethra? Has she given you any explanation for that?
Has your cancer been graded as T1 G3 and keeps returning? Or have you progressed to T2 invasive?
pat