← Return to Experiences with neobladder surgery for bladder cancer

Discussion
Comment receiving replies
@sepdvm

Thanks to a fantastic ,experienced, and compassionate nurse, the catheter removal and following training went smoothly. She made sure that all questions were answered and reassured Tim about the process before ever beginning. It was quick and mildly uncomfortable and she spent at least an hour discussing the followup care sheet and answering our questions. While there was little urine control that day, by 12 hours later he found it had improved greatly. It will be a while before we know just how much incontinence there may be, particularly when sleeping. He is looking forward to the freedom of no catheter and getting some strength back. The "hit by a truck" description is quite accurate for this surgery.

Jump to this post


Replies to "Thanks to a fantastic ,experienced, and compassionate nurse, the catheter removal and following training went smoothly...."

Update 1 year after this neobladder surgery. In March 2022 at the 3 month checkup scan it was discovered that one ureter was partially blocked. Given the options of pursuing it then or waiting 3 months to see if the debris cleared, we chose to wait due to the surgeon's assessment. Unfortunately it was a stricture that closed the ureter completely and followup was needed to place a nephrostomy tube from the blocked kidney to an ostomy bag on his side. He has kidney damage from it being blocked now. Robotic surgery in October at Mayo enabled a reattachment of the ureter to the neobladder and removal of the nephrostomy tube after 4 months. The stent in the ureter was just removed in an easy procedure last week. Through all these invasive diagnostics it was also found that the urethra/neobladder junction was scarred down, so that has been dilated and now he self catheterizes 2-3 times a day to keep it open and remove any residual urine. His urine control is quite good, with only occasional leakage at night. He still has a very large incisional hernia due to the initial postop infection that will need to be repaired next. He wears a binder to support that until surgery can be scheduled. Through all of this, he is still glad that he chose the neobladder surgey over a urostomy. As the caregiver, I am concerned over the loss of kidney function which may become an issue with age. After this experience, if I were faced with the same decision, I would choose a urostomy. Again, the incredible surgical skills of the Mayo specialists made this all possible and we are forever grateful for each day of being cancer-free.