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Experiences with neobladder surgery for bladder cancer
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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@sepdvm thank you so much for your input.
I’ll definitely look into the additional immune support and to answer your question, urology has been managing the infections but I imagine it’s because they’re not presenting in the blood cultures for anything in the blood stream. It’s a double edge sword because on one hand, he’s thankfully able to bounce back, but on the other it’s limiting on what resources to pull in.
Either way, I’ll bring this up to his doctors at his next appointment and see if he can engage with someone who can better support.
I really do appreciate the input. It helps me have hope that things do get better with time.
@acandy1 I started this discussion in 2022 after my husband had many issues including ureter blockage after the neobladder surgery. Other than the initial abscess in the abdomen after surgery, infection was not something he dealt with. The ureter blockage was from scarring likely due to circulation issues after the surgery, but no infection was noted. He had a nephrostomy tube for weeks prior to repair of the ureter. Since ureter repair and incisional hernia repair and dilation of the scarred urethral junction, he has been stable for a couple of years. He must catheterize 3-4 times a day but is not incontinent. He has had one infection discovered not from symptoms, but by routine culture of urine prior to his followup yearly appointment at Mayo Rochester. He is 73 now and content with the final result.
It sounds like your husband may need something to help his immune system fight infection. After chemo suppressing the immune system then this major surgery plus complications he is not able to fight infection well. Perhaps asking the medical team about some prophylactic antibiotic to prevent infection for a while? We use a product caller Glucan Elite which is a form of beta glucan ( from mushrooms or yeast) and has some good research behind it for stimulating the immune system. I was started on it 14 years ago while attending an immune augmentation clinic in the Bahamas to help prevent recurrence of my cancer. The original form is no longer available but this one which I buy on Amazon is also high quality and seems to be helpful. You are certainly at a great hospital with an experienced medical team, but unfortunately infections are often started in long hospital stays and can be due to very resistant bacteria. Have you had a consult with infectious disease or is Urology handling the infections? Perhaps that is something you can also discuss with your team.
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2 ReactionsHello all, as I type here, I can’t help but feel so incredibly vulnerable with a bunch of strangers but in the hopes of navigating the next steps. My husband is 42 years old. He was diagnosed with Cigma cytoid carcinoma which is a fancy way of saying stage 2 bladder cancer. When it was initially diagnosed the doctors couldn’t confirm it was muscle invasive but after starting treatment at Johns Hopkins, we learned the plan forward was chemo/immunotherapy followed by a radical cysectomy and then immunotherapy. We’re so blessed to have has the surgery this past Feb 2026 confirming it was NOT bladder invasive and with him fully responding to the chemo. We are currently 4 months post op but it’s quite a journey. We spent almost the whole month of Feb in the hospital because of the surgery, severe pain sure to the surgery, and then an infection. We thought were okay for about 2.5 months when we learned he has a block on his left uerter. This caused an awful infection and with a stent of sorts put in the drain the urine. Everything seems okay now but he does have to have a surgery to remove the block. The issue is how many infections he’s had with the blood cultures continuing to be negative. As I type this, we’re paranoid he’s getting sick again.
I guess I’m typing to see if anyone out there has experienced this or something similar and what you believe we should advocate for based on what you’ve experienced. If anyone is willing to share, we’d appreciate it.
Much appreciated, a concerned wife
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3 Reactions@daddyroxx2025 I totally understand the shoes you wear and the path you walk! As I’m a single woman turning 70 next month. Diagnosed with high grade bladder cancer last year. My last office scope was clear but my surgeon has decided not to continue BCG treatment because the side effects have become too severe.
This is a major surgery! As a former surgical intensive nurse be advised that the team never fully prepares one to understand the depth of what to expect. And it’s always best to understand to expect and be prepared for the unexpected. That being said you do need to prepare for having home help. There are various agencies as well as ethnic groups that can help you here. I myself have had to overcome many surgical situations alone. I found in Chicago both Thai and Philippine home help. I highly recommend you start researching this in your area. I know and completely understand how not having a partner is tough! Life is worth fighting for! And be prepared to need a good 6 months to recover. While sounding completely daunting at this moment, as you gaze at climbing this mountain, you have to first gather information, then prepare.
You have to have dialogue with all of your healthcare team, nurses and doctors. Ask everyone for resources. None of us here thought we’d have to deal with this. But it’s the hand that we’ve been dealt. I find myself often in prayer for guidance and direction. I’m often presented with someone that I see who is worse off. This journey is not impossible it will require a lot preparation and “will”to survive! Like any journey you’ve taken in life, it is ONE STEP AT A TIME. Please continue to post any concerns or questions here.
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1 ReactionThank You..I Will...🤗
@daddyroxx2025 I had a less commonly done treatment which entailed four weeks, days 1, 7, 14, and 21 were a lighter dose of chemo and then Mondays through Fridays were radiation. I’m six months out and so far so good. You might inquire about this.
Good luck today! I am willing to support you anyway I can via this medium... Glad to be of any help
(Yes catheters are the worst!!! They should really come up with a better way or improved way to do this)
Thank You for Your Reply....Today will be a Rather Simple Surgery without the Cath...Thank God for that, that was the Worst....but todays Surgery is to see if it has Spread...I'm ready for either one...🤗
@daddyroxx2025
Good luck today. I hope things go well. BCAN is a resource I would suggest if you'd like someone just to talk with about the journey. They have a survivor program and can set you up to talk to someone experiencing the same challenges. All my best to you.
@jowilliams1
Thank You for Responding, I am Devestated by all of this....
After Mondays Second Surgery and if the Surgeon has Discovered it has Spread,...I have Decided to Walk Away From all of this,..I cannot Comprehend having a Bladder and Prostate Removed and Living with this New Way to Live...Its to much, and I have Decided, I Can't and Don't Wanna Live this Way...I'm Sure theres Others that Adapted, and Live a Life that Somewhat is Normal, but with Changes..I Respect all of this....At 62, and Single and by Myself Completely...I dont have that kind of Help with this New Way to Live...and I am Ready to Walk Away from this Cancer Life and Leave this Life....I will Carry on till I cant...and That will be that...I am Sad, but Ready and Willing to Walk Away....
Thank You for your Time and Good Luck....🤗
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