Hi Melodie ,
This is MZ- Holly...
Just wanted to let you know how I feel about my neobladder...
My thoughts bounced between the Indiana and the neobladder however - and I had a high grade variant making it aggressive and was a stage T2a when found. I didn't wait to RC and diversion surgery long. At RC it was stage 3a so I did right I think with chemo after. I have read some that they feel chemo prior to surgery is promising so I am glad you are not rushed to choose.
Iwas really worried about continence and having to self cath. It is true - with the neobladder there is a risk of having to self cath. My surgeon - Dr Micheal Blute out of Mayo's Rochester, MN - has been a pioneer in neobladders for men and then women. I was assured of a high sucess rate and he made me confident my chances of not having to cath would be good ANd that my chances of achieving continence would also be high.
The Indiana pouch looked like a viable option primarily becuase self cathing on the belly seemed less scary and continence was not an issue. I did worry about my self image changing tho. I just married in Dec 06 and was dx'd in 1/07 - my husband was supportive whatever my choice would be.
My RC neobladder went in on 3/13/07. The procedure was done robotics and took 4 hours ( I had already had a hysterectomy in 04) After 8 days I went home only to get a c diff infection for 3 weeks which slowed my training the new bladder among other things. My cath came out on 4/9 and I became tubeless
I basically have had a week between the last c diff infection and my 1st chemo - not much time to train it ( Cisplatin is given with lots of diuretics and I was going thru plenty of Good Nights that week). I can go 3 hours usually during the day between pees, sometimes as long as at night. I do wear the pull ups mainly because the chemo has made incontinence a current issue. I am confidnt that this will pass and continence will be achieved. I am at peace with my choice.
Hope this has helped somehow - my recovery has been complicated, yet I feel like the goal will be obtained. Best of luck to you - Holly