What to expect after bladder removal surgery when BCG didn't work?

Bladder removal surgery is a significant step, and it's completely natural to have questions about what comes next. Many people in this community have walked a similar path and found ways to adapt to life after surgery, with various options available for managing daily activities. Consider reaching out to your medical team about what specific recovery timeline and lifestyle adjustments to expect - they can provide guidance tailored to your situation and help connect you with resources that might be helpful during this transition.

I had a cystectomy 6 weeks ago. It is a pretty long recovery. I am starting to feel like normal after six weeks. I had an awesome surgeon who did the surgery robotically. I now have a stoma. I was nervous at first about the stoma but it really is not so bad. They give you a lot of support through the hospital. Good thing is I am now cancer free.

8 weeks from surgery and I am feeling normal. Not sure how the surgeon did it but my stoma is pretty. I woke up this morning and didn't even realize I had a stoma except I didn't have to rush to get up. I am feeling wonderful and I am cancer free. Living without a bladder isn't bad at all. I did have the best surgeon.

Who said bladder removal, urologist?? Go to oncologist, mine said surgery is last option

I was told that I needed my bladder removed. I decided to try radiation treatment, after 29 of 30 treatments, the urologist found cancer on the outside of my bladder. I lost all trust in him. He was only capable of doing long cut and long stay afterwards to heal. Went to urologist in Birmingham, Al. about an hour away. 6 1/2” incisions and a total of 5 days in the hospital and I was home. No pain medication necessary after getting home. I’m going through immunotherapy now. Had to add padcev to keytruda after 15 months because of cancer cells showing up blood (signatera testing). Count went from 12.8 parts per milliliter to 0 in 3 months. Count has not gone up, but I developed neuropathy after 5 months of treatment. We are reducing the Padsev again (had to reduce after 1st treatment due to bad rash), but I don’t know how long or even if the neuropathy will go away. Please check side effects of all of your meds. I needed the Padcev but I should have notified the oncologist when the neuropathy started instead of 2 months later (this was on me). If you are in chemo or immunotherapy, tell your nurses anytime something changes. They will ask the doctor if it’s not a normal reaction. I never had any reactions until I was put on the Padcev, so I didn’t expect anything. Don’t make my mistake even if it’s minor.