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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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What if I do nothing at all, Stop with Everything after this Second Surgery,
I will Die, Right ?....
I really dont think I can do this...
@daddyroxx2025
It is scary. It's completely normal to have all of those thoughts running through your head. All the "what ifs."
I did not have a partner as I went through it either. My siblings were a huge help along with my friends. All you can do is take one day at a time. It can feel overwhelming but if you just concentrate on today and tomorrow, I think it makes it a little easier to tackle. You are stronger than you think you are. I will say a prayer for you tonight.
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1 Reaction@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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1 Reaction@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.
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...🤗
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)
@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.
Thank You..I Will...🤗
@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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