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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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I meant in the getting up every two or three hours through the night with a baby... so if your wife was lucky enough maybe you do. 🤣
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1 ReactionI like to comment"kind of like having a newborn baby"... Us guys just wouldn't know about that but if you say so 😁
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1 ReactionI've continued to work through immunotherapy with no problems. I have a desk job though so that's easier than something more physical where you may be in your feet all day. Hopefully your employer will be understanding and offer you some flexibility in whatever way you need.
I can tell you with all of the side effects listed I was on the fence about doing immunotherapy but it has been so much easier than chemo.
I also think with Opdivo one of the more common side effects is a rash or itching. I've had no itching and for about a week had a very small rash above both of my knees. It went away on its own and there's been nothing since. I think the body is just trying to figure out what to do with this new drug in it.
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1 ReactionI have never heard of Natera testing. I asked about a genetic testing but they told me a CT scan is just as good; even though I have read it is best to have a genetic test to know your body and what would probably help it better 🤷. I am going to ask again when I go on April 1st for a blood test and to go hear about the immunotherapy treatment planned for me. My original pathology test said I had high-grade urethral carcinoma with extensive squamous cell differentiation, but it was redone and came back as Pure Squamous Cell Carcinoma, which apparently chemo nor radiation can help with. I was also told with the immunotherapy I could have thyroid issues and if I did I would need to take supplements for that. That is just one of the issues that may arise but he said it is good to have something happen as it apparently means it is working. Thank you for telling me about your experience, I am very worried about going back to work before I know how I might react to the immunotherapy. I am on STD which ends on April 17th and if I continue, it would then change to LTD (long term disability)
Keep up with the exercises. It could take months, but if you keep at it, things will improve. I had ladder cancer and along with BCG treatment with irritated the bladder, and a TURP operation, which also can cause incontinence. I have urinals all over the place. However, I’m finding more and more control after months of problems. I try to empty my bladder before I have to travel, and still wear a sanitary diaper. Which is more for my peace of mind than what I’ve experienced. Every time I’ve been able to make it to the location I was going and find a bathroom before any type of accident. Hope your life improves. I know it’s very frustrating and inconvenient.
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2 ReactionsI have been on Opdivo since 12/30/24. I get it every other week. It hasn't been bad at all. My only real side effect has been the recent shut down of my thyroid. I started medicine for that a month ago but am experiencing some real fatigue now. Hopefully that will improve. I had a CT done yesterday and will see the oncologist on Monday morning. Mine was high grade urothelial carcinoma with focal squamous differentiation. I've done lots of genetic testing in the event it returns to help them know what the next steps might be. I'm regularly doing Natera testing every 3 months too. Are you doing the Natera testing?
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3 ReactionsThank you 🫂
I believe I got an all clear, as I wasn't told anything when I just saw the oncologist yesterday. All he said about the pathology from the neobladder surgery was that the cancer was all removed and 24 lymph nodes were also removed where 1 was cancerous. I start immunotherapy on April 3rd. How has the immunotherapy been for you? What type are you on? They will have me on Nivolumab (OPDIVO) my cancer was pure Squamous Cell Carcinoma in the bladder; it was high-grade and aggressive so it has a good chance of coming back. Hopefully this will work to stop new cells from forming, without making me too sick. Hoping everything continues to go good with your recovery.
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2 ReactionsHello Tanya. Your urethra has to get used to being without a catheter again so be patient with the leakage. Normal kegels done 2-3 times a day will help to get your muscle control back but it takes time. I would hope your surgeon's office has a nurse or PA who can coach you through this as you have questions. My husband dealt with daytime leakage for weeks before it became better. Now only leakage at night and it is minimal. Just imagine the massive trauma in your abdomen with that surgery. It will take months of healing, and nerve tissue is very slow to heal so bladder control can really take a while. Don't get discouraged, and remember that all this you are going through is better than having cancer.
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4 ReactionsTanya, I had the exact same experience with the leakage so bad while having the catheter so I can empathize. It was very frustrating. They want you to walk around but the last thing you want to do is that when you're leaking so badly.
Since the removal I've done exercises three times a day. I've never missed a time and at 4 months post surgery I'm really happy with my progress. The only thing I can't do yet seems to be run (for my ringing phone🤣, I'm not a real runner). I continue to do my exercises though. So keep doing them and you'll get there!
I haven't had any problems with my neobladder. I set an alarm throughout the night to get up to use the bathroom regularly. My surgeon doesn't want the bladder to overstretch so that it works better. I'm used to waking up now (it's kind of like having a newborn baby... you get used to it). I'm so thankful I was able to go this route.
I'm doing immunotherapy now for 1 year. If you don't mind me asking, did you get the all clear or have any nodules positive? I had one of thirteen positive and a positive margin unfortunately. I hope your pathology report was better.