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Experiences with neobladder surgery for bladder cancer
Bladder Cancer | Last Active: 12 hours ago | Replies (33)Comment receiving replies
Hello 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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@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.