My husband's experience with neobladder surgery for bladder cancer

Posted by Sue @sepdvm, Jan 10 7:38am

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.

Interested in more discussions like this? Go to the Kidney & Bladder group.

@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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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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@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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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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