Just a quick update re my husband. Total total recovery. Hard to believe how good he feels. Recent July Catscan gave him the all-clear. Has gained back all the lost weight (maybe too much:). He continues to have no issues with life sans bladder.
To recap, he only always had carcinoma in situ, high grade. Bcg worked initially, then didnt. Gemcitabine no go. Fingers-crossed. The only thing he frets about is his arthritic knee. May it stay like that!

I thought an update about my husband's neobladder with radical cystectomy is due. While he has remained free of bladder cancer, one ureter was completely blocked at the 6 month postop scan. Now he has a nephrostomy tube to drain urine from that kidney until they can repair the ureter. Unfortunately, because of the blockage, he has lost much kidney function on that side. We are waiting to hear when his surgery is scheduled at Mayo Rochester. He also has a large incisional hernia secondary to the initial abscess and drainage through the incision. That will also need surgical repair. The frequency of these complications is rather high with the neobladder surgery, and we were not prepared for this. My advice to @suzyq2009 is to ask lots of questions about the surgery, postop care, and potential complications, no matter which urine collection system you choose with the radical cystectomy. Even at Mayo Clinic, that information was not freely shared with us as we did not ask enough questions. Good luck to you and it is wonderful that you are feeling well and keeping busy.

I so appreciate reading these ladies' husband's experiences. I've had many surgeries, but this is the only one I have dreaded. After going through so much since 2015 with my ureter being constricted, dealing with stents and exchanges every 3 months, and worrying about the tumor that penetrated my ureter wall - I was so in hopes of avoiding having the cancer reach my bladder. Now that it can no longer be avoided, it has taken me some time to mentally adjust to not having a choice. I have cleared that hurdle, and I'm now ready to have the best possible medical professionals advise me regarding the best choice for me. I would love to hear from some women who have gone through this as well, if there are any out there. Thank you!