Anyone had a cystectomy? — Scope | Disability forum
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Anyone had a cystectomy?

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Cyc2018
Cyc2018 Community member Posts: 4 Listener
edited December 2021 in Rare, invisible, and undiagnosed conditions
Hi I'm looking for advice regarding having a cystectomy if you have cerebral palsy. My dad has bladder cancer and we are finding the choosing the correct treatment alongside the consultant is proving difficult. 

If you have any advice regarding the operation and after care, we would be extremely grateful .

Thanks 
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  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
    edited November 2021
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    Hello @Cyc2018 and welcome! Thanks for your questions, hopefully the community can help you in answering them. 

    I'm sorry to hear that choosing treatment is difficult, it's so important to make the decision that's best for your dad, and one that your dad wants as well.

    @Richard_Scope may be able to assist you with your query relating to Cerebral Palsy, as our resident CP expert.

    Do let us know if we can help you further. For now, I've tagged your post as unanswered so it can be easily found.

    Alex
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  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    I see this may well have been answered in your discussion in our Cerebral Palsy category, but the offer of help still stands if you have any further questions @Cyc2018 :)
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  • Libby_Alumni
    Libby_Alumni Scope alumni Posts: 1,251 Pioneering
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    Cyc2018 said:
    Hi I'm looking for advice regarding having a cystectomy if you have cerebral palsy. My dad has bladder cancer and we are finding the choosing the correct treatment alongside the consultant is proving difficult. 

    If you have any advice regarding the operation and after care, we would be extremely grateful .

    Thanks 
    Hi @Cyc2018, 

    I just wanted to check in to see how you're getting on and if any progress had been made with your dad? I see that our community members have offered some support/advice on this thread, which I hope has been useful for you. 

    Please keep us updated on your situation and I hope you can find the right support/resources soon :) 

    If you have any other queries or questions, please just let us know. 

    Libby
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  • _witchcore
    _witchcore Community member Posts: 32 Connected
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    I haven't had my cystectomy yet but I've been waiting to have one since 2018. It's classed as non urgent so the first thing I would say is prepare to be waiting a very long time due to current waiting lists. Even before the pandemic I was told that even though my condition is serious (I could get a blood clot due to severe bleeding inside my bladder), bladder cancer patients take priority over all, which to me is understandable.

    When I was referred to the surgeon by my urologist there were a few things that were done in the first 18 months, before the surgeon agreed to do it. It may be worth preparing for these discussions:

    - I had to see the stoma nurse. You should be able to call your local continence team and ask for someone to come out. They left me a DVD to watch and gave me a trial pack with 20 types of bags and a fake stoma. The idea is you stick this foam stoma on in the place where they will do any urostomy and practise putting the bags on, wearing them all day filled with water, and taking the bags off. To make sure there's no allergy to the adhesive or other problems.

    - I was asked if I had looked into the type of surgery I want. My urologist had recommended removal rather than diversion because of the bleeding. My surgeon recommended radical cystectomy with formation of ileal conduit so I haven't looked into other types but I would read up on it in case there's more than one option.

    - Be prepared for having lots of tests and referrals to other colleagues for tests or to check if other treatment is available. the majority of the time I've been waiting has been spent waiting for tests like dye tests to check my kidney structure.

    I hope someone who has had a cystectomy will reply as I'm also interested to know about their experiences.
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