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Mentor

My husband's experience with neobladder surgery for bladder cancer

Posted by Sue, Volunteer Mentor @sepdvm, Jan 10, 2022

Last year we were looking for patient experiences with the neobladder surgery where a section of ileum is used to create a functional bladder while the cancerous bladder and prostate are removed. There wasn't a lot of information to be found, so I wanted to add our current experience as my husband is 4 weeks postop from this surgery at Mayo Rochester. What we have learned so far is that we did not ask beforehand about potential complications and setbacks. You go into a massive surgery like this planning for the best, which is correct, but a little more education about the potential problems would have made us more prepared. My husband spent a full week in the hospital and needed every day there. His care was exceptional from nurses and our wonderful surgical resident. There is a lot of aftercare with catheter flushing and drainage around the catheter, GI issues of getting the gut working again and finding an appetite, diarrhea and constipation. Persistent postop hiccups were a big problem for over 10 days after surgery, interrupting sleep day and night. There are treatments for this, which perhaps should have been utilized sooner. Once home, an incision blowout of drainage was followed by a flood of urine through the incision several days later, entailing a visit to local ER, where scans were done and sent to Mayo and our surgeons determined a plan to plug the leak via catheter, which worked. We are many hours away from Mayo and an emergent trip was impossible. Other options including drainage of urine direct from kidneys through body wall into an ostomy bag were discussed but we have not had to pursue this. While we had a scheduled appointment last week to have catheter removal, now we are looking at unknown weeks from now to return for a scan and catheter removal once neobladder fully heals. On the bright side, he is feeling pretty good in general, gaining strength, and able to eat normal foods 4 weeks after surgery.
I am not trying to scare anyone away from having this surgery, as it has removed a bladder with recurrent invasive cancer and offered an option for a cure. It will be worth ealing with the problems when all is said and done. We are both medical professionals, and dealing with the surprise issues was very worrisome to us. I cannot imagine how it would be to someone with no medical background. So my message is, ask the questions of your surgeon when you have the chance beforehand and have an idea of the issues you could be facing, should everything not go as planned. We are blessed to have the skills and dedication of Mayo Clinic surgeons who can offer such a unique surgery.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 13, 2022

@sepdvm, I really appreciate your sharing yours and your husband's experience with neobladder surgery. @kwagner @pameladstone @johnmclaughlin may also be interested in this discussion.

Sue, what questions do you wished you had asked? How might people considering this surgery be better prepared?

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Mentor
Sue, Volunteer Mentor | @sepdvm | Jan 13, 2022

I would have asked how frequently do you see complications that can delay healing? I am hearing it can be upwards of 60%. What sort of complications could be expected? Is it possible to have issues postop that would cause the loss of the neobladder? I would ask if your particular surgeon places kidney drainage stents through the body wall or not routinely? This was described at our educational pre-op visit by support staff and we were expecting it, but Tim's surgeon does not use them routinely. The answers to these questions would have had us better prepared to go through this massive surgery and postop period, but would not have changed his decision to have the surgery. I would have to say that in the available literature that I read about the neobladder surgery, there wasn't much discussion of complications, and if such issues are relatively common, then it is better to be prepared with knowledge. It would help to ease some of the worry when things happen that you did not expect.
Update 41/2 weeks postop: At our surgeon's request we scheduled a CT Cystogram locally to see if the neobladder is still leaking. Radiologist thinks it looks good. We will see how the surgeons feel about it and how they want to proceed.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 21, 2022
In reply to @sepdvm "I would have asked how frequently do you see complications that can delay healing? I am..." + (show)
@sepdvm

I would have asked how frequently do you see complications that can delay healing? I am hearing it can be upwards of 60%. What sort of complications could be expected? Is it possible to have issues postop that would cause the loss of the neobladder? I would ask if your particular surgeon places kidney drainage stents through the body wall or not routinely? This was described at our educational pre-op visit by support staff and we were expecting it, but Tim's surgeon does not use them routinely. The answers to these questions would have had us better prepared to go through this massive surgery and postop period, but would not have changed his decision to have the surgery. I would have to say that in the available literature that I read about the neobladder surgery, there wasn't much discussion of complications, and if such issues are relatively common, then it is better to be prepared with knowledge. It would help to ease some of the worry when things happen that you did not expect.
Update 41/2 weeks postop: At our surgeon's request we scheduled a CT Cystogram locally to see if the neobladder is still leaking. Radiologist thinks it looks good. We will see how the surgeons feel about it and how they want to proceed.

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Sue, how did the catheter removal go?

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Mentor
Sue, Volunteer Mentor | @sepdvm | Jan 22, 2022

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.

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Mentor
Sue, Volunteer Mentor | @sepdvm | Dec 14, 2022
In reply to @sepdvm "Thanks to a fantastic ,experienced, and compassionate nurse, the catheter removal and following training went smoothly...." + (show)
@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.

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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.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 18, 2022
In reply to @sepdvm "Update 1 year after this neobladder surgery. In March 2022 at the 3 month checkup scan..." + (show)
@sepdvm

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.

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i appreciate this update, Sue. I'm especially intrigued that if given the choice again with the information that you have now, you and your husband would not make the same choice. You, as the caregiver, would choose urostomy given concerns of declining kidny function, and your husband sticks by the neobladder despite some of the complications. Thank goodness there are options and we have choices, right?

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