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  • This topic has 2 replies, 3 voices, and was last updated 8 years ago by SJay.
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  • #8397
    Caring Daughter
    Participant

    Hello members. My name is Joanne and my father was recently was diagnosed with bladder cancer in May. After seeing the specialist- surgeons – oncologist- Radiologist and series of tests and results we know that he is stage t2- t3 invasive. After the breakdown of choices – we are down to neobladder or the Ilostomy bag. Due to weak kidney( as the cancer is blocking one of them) and slight hearing loss, Chemo treatment before surgery was discouraged but not out of the options.My dad had made his decision surgery no chemo. Yesterday saw the surgeon and even though we know what needs to be done , financial politics have come into play. Due to health Canada budget and hospital needing to work with a budget for financial reasons they close down for 1 week in july. only emergency cases. surgeon has only a spot on Aug 30th. The surgeon says that’s too late. It could and probably will spread. Now to today. Waiting for surgeon to see if one of his 3 colleagues can do it or he begs surgery to let him do it …or get chemo and have it done in August. We may not have a choice. Any experience? Also looking for positive of negative outcomes of both procedures/lifestyle aftercare of the neobladder and the Ilostomy bag. Feeling Frustrated at this time.

    #20709
    Rick B
    Participant

    Hi Joanne,

    I’m sorry to hear your dad has been diagnosed with BC. I sense the frustration you must be going through. I am a bit surprised your dad’s urologist has not referred him to a colleague in Ottawa where he could get immediate access to surgery, if that is best for him “right now”. I thought the days of no access to needed medical services was a thing of the past. Ottawa has some of the best Uro’s around as well as a top notch Cancer Care Center.

    I strongly recommend you call BCC (toll free number at the top of this page) to see if they can guide you on how to deal this for your dad. Alternatively, your dad can ask his Uro to refer him immediately to a large cancer center (i.e. Ottawa, Toronto)…his situation sounds urgent so an immediate referral should not be an issue.

    Thank you for reaching out…best wishes for your dad…stay strong and positive that something can and will be done.

    God Bless.

    Rick

    #20710
    SJay
    Participant

    Hi Joanne

    Sorry to hear about your father. I know the delays must be very troubling for you. Your father is lucky to have you advocating for him. Sometimes it’s the only way to make things happen.

    This is a good site to come to as it has lots of reliable information and useful stories from the participants. I’d recommend looking at the Facing Bladder Cancer section on this website.

    I had an radical cystectomy (RC) with a neobladder on April 13 this year. It was a 6 hour operation and I spent 6 days in the hospital after. Prior to that I had neoadjuvant (before surgery) chemotherapy with Cisplatin and Gemcitabine over a 12 week period, followed by a 5 week wait to recover from the chemo before surgery. Pathology after the RC indicated no cancer in the bladder, at the margins or in the 18 lymph nodes they dissected, so I guess the chemo worked.

    So far my bladder has been stretching and I go longer between urinating. I had a cysto today and the doc said everything looks perfect. Having said that, it does takes me 10 to 20 minutes to urinate and the doc isn’t really sure why. He is suggesting I try daily catheterisation.

    I’m an active person and hike, kayak, cycle, ski, etc. I chose the neobladder because I thought overall it would be less of a hindrance than a bag, but that’s only true if everything is working well. BCC was kind enough to put me in touch with several people who had either the IC or the neobladder and I got to discuss it with them on the phone. I appreciated that very much. I’m still not sure how things will be in the future as it takes some months to settle down. Everyone turns out differently.

    There is lots of discussion on the topic in this forum if you do a search.

    Good luck and let us know if you have any questions or just want to get something off your chest.

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