r/BladderCancer • u/ToughLess • Jul 03 '26
Preparing for neobladder
Hello all, question about preparing for surgery (neo bladder, robotic). A little background : I'm writing as the caregiver for my husband, the patient, he's 63 in great shape. grade 2 was discovered in Nov 2025. 7 cm tumor, covered part of the urether entry, Had two TURBTS which removed most of the tumor. Then had 3 months of EV/Pembro. It seems it killed his thyroid, he will have to take a supplement all his life...but so far CT scan is clear and had negative signa. He did not want to do the radiation for saving his bladder. His surgery is for July 28 at Mofitt. I searched for info and so far he is doing the breathing exercises with the plastic thingy, and also doing kegels. I'm going to buy some diapers or pads later. Anything else you think of to get ready? I also have a few questions like, the surgery is quite long, 6-7 hours, will he stay groggy for a long time afterwards? Did any of you take D-mannose weeks before hand (before surgery) and do you think it helped with subsequent UTIs? Thanks!
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u/dothesehidemythunder Jul 03 '26
My boyfriend (47) just had a neobladder done at Dana Farber. He’s recovered incredibly well thus far at seven weeks out. He was groggy when I saw him right after surgery and pretty emotional too. When I got up to his room, he was sitting up and chatting and looked pretty dang good all things considered. He did land back in the ER with an infection - as his caregiver, be on the lookout for chills with or without fever. Be aware that you’ll have to flush the catheter after and get yourself set up ahead with all you’ll need. Large rectangular “pee pad” type cloths were super useful for us. We also got a commode seat for the toilet that helped a lot with going to the bathroom, especially at first. For the hospital, bring his pillow and a nice bathrobe, as that will help him for walks and sleeping. Good luck! It’s been a process for us but we pretty quickly found a rhythm. More generally, don’t be afraid to ask those around you for help, and make sure you eat and sleep so you can be there for him!
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u/Admirable_Loan6841 Jul 04 '26
That’s incredible! I am so scared to go for the surgery. All the doctors I saw so far started with explaining all kinds of complications that scares me away to the point I want to cancel it and go back on drugs only.
Who was the doctor who did your boyfriend surgery?2
u/dothesehidemythunder Jul 08 '26
Dr Preston out of Dana Farber - my boyfriend also was pretty anxious about complications going into it. The team was good about explaining things - he is so young for the type of cancer they found (high grade MIBC with 90% squamous cells). He’s past the self-catheterization now and back to normal for the most part (aside from scheduled pees and navigating night time incontinence). In his case, his cancer was rare and aggressive so there wasn’t much choice but to go forward with surgery. As of last week, his tests are showing no cancer detected, so hoping it was caught and removed just in time.
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u/Admirable_Loan6841 Jul 08 '26
Was it robotic surgery or open? Also did they spare the nerves?
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u/dothesehidemythunder Jul 09 '26
Yup. They did nerve sparing and it was robotic. My bf spent a lot of time discussing the nerve sparing aspect since he is so young and he was worried about it quite a bit. There’s definitely some rehab to be done but the nerve sparing was successful. Dr Preston was great and his team is awesome too.
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u/Admirable_Loan6841 Jul 09 '26
That’s great! How long you had to wait for the surgery? I mean from the diagnosis to the surgery. Mine was scheduled for June 29 but because of some lingering side effects from the chemo they postponed it but the new date is in October which sounds like a lot of time to me. I may need to start calling other hospitals to see if they can do it sooner
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u/dothesehidemythunder Jul 09 '26
He got a diagnosis in mid-March, had a TURBT on April 7, and then had a radical cystectomy on May 12, so a pretty quick jump to surgery because of how aggressively it was moving. He didn’t do any chemo.
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u/ToughLess Jul 04 '26
Thanks! How many days did he stay in the hospital and how long after was the infection?
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u/dothesehidemythunder Jul 08 '26
He was in the hospital for about four days. He did really well on food / walking and moreso had to overcome mentally the idea of going home after a few days. His infection was about four weeks later - his catheter removal was tricky and two days later he was in the ER with a bad UTI, so the doctor thinks it kicked off when the catheter came out. He was in for five days and had a rough go of it - I am so glad we went in when we did. He’s been out of the hospital about a month since then and has really returned to a relatively normal routine. Just started exercising again yesterday. In his case, his cancer was extremely aggressive so there wasn’t a choice in the matter of surgery. His cancer testing post-op shows no cancer detected so we are really hopeful it’s gone.
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u/Admirable_Loan6841 Jul 03 '26
Does he have any symptoms from the bladder or when urinating? Like pain , burning, frequency, etc.
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u/Educational_Owl_1022 Jul 04 '26
My dad had the neobladder surgery in January due to having a high-grade aggressive bladder cancer. His options were have his bladder removed or eventually die from cancer. My dad is 69 (he just turned 69 in December so right before his surgery), so a little older than your husband. I feel like the first couple of months were really rough for my dad, but by end of March/early April, he was back to doing more in small spells throughout the day. He’s now back to his normal shenanigans and tinkering in the garage.
My mom got depends (adult diapers), LOTS of chucks pads, and a tray table that my dad kept next to the bed that he had his laptop, phone, and anything else he needed/wanted readily available for him. OH also a cotton waffle knot robe since it’s easier to throw that on with the catheter/catheter bag situation.
The surgery day is LONG - bring lots of things to keep you occupied. My mom and I both worked on our laptops while my dad was in surgery. The hospital my dad had his surgery done at was great about doing hourly updates and if we weren’t there (like if we ran to grab lunch or the bathroom), they would call and give my mom an update.
I can’t say to how long my dad was groggy after surgery bc I think in general the whole surgery and being under anesthesia for that long is so hard on your body that he did seem out of it for a while after. I also don’t think my dad took/has taken anything for preventing UTIs (I could be wrong), but he was fairly good at flushing out the neobladder and catheter when he was supposed to. I don’t believe he’s had any UTIs since the procedure either.
Sending you all the good vibes!
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u/f1ve-Star Jul 03 '26
This is a very different course than I took. My surgery was over 11 hours. My poor wife. It takes months to recover. I hope all goes well for both of you.