Experiences with neobladder surgery for bladder cancer

@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?

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.

Sue, how did the catheter removal go?

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.

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.

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?

Neobladder Recovery NotesI am in my 6th week of recovery from neobladder surgery and I thought I would jot down a few notes for the benefit of others. I tried to keep informed about this complex surgery and looked online for recovery notes but nothing I have read online adequately prepared me for the realities of the recovery period. What I have learned is that there are two main issues to deal with during the recovery period – neobladder/urine control and physical exhaustion.Things to do in advance -1. Get a mattress waterproofer sheet and place it over the mattress. Cover this protector sheet with your typical beddng sheet. Place a thick absorbent towel for your torso in the middle of the bed on top of the sheet. This towel will catch leaks and protects your sheets to some degree. I tend to sweat more when laying on a liquid-proofing sheet so the towel minimizes excess sweating. You may also need this towel at first to wrap around your torso when you wake up in the middle of the night to run to the toilet.2. I installed a bidet before the operation and I am so glad I did. You will have loose bowels for a few days after the operation and nothing could clean you better than a bidet. Everyone I know who buys one loves it. Bidets cost less than $100, could be installed by anyone on any toilet in 10 minutes.3. Buy a bunch of diapers - I am using four to five a day - and get the kind for maximum leakage. Pack a couple in a back pack or day bag along with extra pants when you go out. I also just ordered some baby wipes for quick cleans in the middle of the night especially.4. Start shopping around for special boxer type pants that prevent leakage that spills out of the sides of the diaper and down your thighs. You need to get mobilized as soon as possible so anything you can do to assist in mobilization is a good thing.The hardware you will come home with -I needed two collection bags, one for my abdominal drainage and another for my bladder via a Foley catheter. The stent drainage mechanisms appear to be the same mechanisms used for stoma drainage. The stoma gaskets and drain lines were in place for about 3 weeks and my catheter was in place for about 4 weeks. The stents were painless and the catheter uncomfortable however I've had surgery requiring a catheter before, but for anyone's first time having a catheter you'll probably be uncomfortable for a while especially during the night. I tried using Lidocaine and Tylenol neither of which really eliminated the discomfort. I tried to distract my mind from the pain by thinking positively and meditating and that seemed to help a little bit.Before you walk out of the hospital - make sure your catheter is positioned correctly on your thigh. My most successful strategy was to use the sticker with the clasp instead of the straps. Have an experienced nurse place the sticker correctly before you leave the hospital.You must absolutely walk in order to regain your strength. I suggest you ask for an extra night bag so you have the thicker tubes to connect to your collection bags needed for walking about. The thin wall tubing they give you to connect to your collection bags are useless if you go for a serious walk because they just pop off the connection nipples on the bags. If you cut the thicker lines off your night time bag use the thicker wall tubes for your collection bags and it will stay in place and minimize leaks on your clothing and floors. When cutting the tubing you're using from your night bag be in a sitting position, position the collection bag on the inside of your calf. You might just use the flexible tubing as your sample length to cut, replacing the thin tubes of the collection bags with the thicker tubing cut from your extra night bag.I have heard it takes several months to manage your neobladder while it enlarges naturally over time to accommodate a capacity comparable to your original bladder. I have found that I have the ability to hold slightly more fluid each passing week.I have learned online that it may be several months before I have adequate urine control after the neobladder gradually naturally expands and l gain more control doing pelvic muscle control exercises. One of my friends commented that it sounds like I'm "on a slow boat to China" and this is perhaps going to be true but every little improvement no matter how slight is heartening and reaffirming.

Hello @bajaman , It sounds like you have things well under control. Keep up the exercises and urine control does steadily improve. My husband is a year and 5 months post neobladder surgery but he had many complications. His urine control is pretty normal during the day, but leaks at night are inevitable. Pads are still in use with a disposable over the top of the washable one. He is getting back toward normal activity now 8 weeks after his last surgery to repair a large incisional hernia. He will likely always have to self cath daily due to all the issues he had, but he can urinate normally also. All in all, better than bladder cancer. Good luck and keep the faith.