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Bladder is being removed

So I was ten years cancer free after 2 rounds of BCG. Then out of the blue last October blood in the urine. After having it removed turned out my tumor grew up. High grade urothelial carcinoma. After having it removed four more grew back and now its invasive. Doctor has told me it's best to remove my bladder. Surgery is scheduled for December. I have until then to figure out what I should do. Dr suggested a neobladder but I just don't know the pros and cons of each option.

  1. Hi ! Thank you for sharing your experience. I'm glad you reached out to this community. While I am not a medical professional and cannot provide any medical advice, I thought I'd share another community member's story about their decision to have a neobladder:

    Have you talked to your doctor about the pros and cons of each option?

    Please keep us posted on how things go. Let us know if there are any ways that this community can support you & know that we are always here. Best, Alexis (Team Member)

    1. Sorry to hear this development, but we are hopeful that it's still manageable. I had a similar initial diagnosis in Aug 2021 (high grade but non-invasive). I did six weeks of BCG followed by another TURBT - results were disappointing. Still had several tumors. Plan B was a low dose chemo treatment in Dec-Jan and another TURBT with similar disappointing results, so I agreed to cysto and neobladder in May 2022. Prostate and lymph nodes were removed and tested negative. The bladder removal was unremarkable, but my recovery was amazingly easy. Pain was never higher than 1/10 while taking only Tylenol. Was dismissed in 5 days and the worst part was having a cath for 3 weeks. After that, I was pain free but incontinent for a couple more weeks until the sphincter finally became functional again. I'm only a sample of one, but the cysto and neo were nothing to fear, and five months later I am happy to have done it. Best of luck to you!

      1. @CommunityMember5060d - I understand your anxiety about waiting another couple months as your cancer has returned. Something i did that may be available to you - I was put on a waitlist in case there was a cancellation which would create an opening sooner than my surgery was scheduled. I actually received a call and my surgery was moved up 1 month. Not sure if that is a possibility but with the long wait for appointments etc these days I always try to get on a wait list if possible. In the meantime, try not to stress as you do have a plan and a surgery date at this time. My best to you. Please keep us updated. My best to you. Linda Urbanski (moderator, team member)

      2. hi. Apologises I am a little late in really in replying. I was in Hungary travelling for work last week. I understand your concern. Have you let your medical team know that you are concerned? Do you have a date for the surgery? I had my bladder removed in 2017 and happy to answer any questions you may have. Wishing you well. Laura, Moderator,

    2. Sorry to hear that. Reoccurence is a nightmare thought for all of us. I have been stage zero since 2015. Get checked every year. What was your follow up shcedule after the first bout if you dont mind me asking. DanFranke, team member, bladder

      1. It was once a year for five years then skipped a year and was clear and that was it.

        1. @Communitymember50690d - I wish for a disease such as ours - where it can come back suddenly and with a vengence - that annual testing at minimum is required for at least 10 years. I had regular scans for 5 years and then went to kidney ultrasounds for the next 5. Wishing you the best. Linda Urbanski ( moderator, team member)

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