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IMPORTANT: The Bladder Cancer Canada discussion forum is not a substitute for professional medical advice or treatment. The opinions & contents in this forum is for information only and is not reviewed by medical professionals. They are experiences & opinions of patient members like you, and is NOT intended to represent the best or only approach to a situation. Always consult your physician and do not rely solely on the information in this site when making decisions about your health.

Viewing 6 posts - 1 through 6 (of 6 total)
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  • #8525
    Staff
    Participant

    Hi. I was diagnosed in February 2017. I have since had the surgery for the pathology. I have High Grade Muscle Invasive Cancer. Good news is that it has not spread outside my bladder. The bad news is my bladder has to come out.

    I won’t go on right now about the devastating and debilitating anxiety I experienced when first diagnosed. But I will say it hasn’t completely disappeared but is less frequent.

    I was prescribed an initial 12 weeks of Chemo. Three week sessions X 4 with a CT scan after the first six weeks to ensure it was shrinking the tumour and not spreading. The CT scan had positive results and I am doing the second six weeks right now. Not sure if there will be a third six week session or not.

    I have to let my Urologist know my decision at the end of August as to which diversion I want. The Neo Bladder or the Ileal Conduit. I am 63 years old and otherwise in good health. I don’t know what limitations the different procedures put on a persons activities. Can I swim? Can I SCUBA dive? Golf? Bike ride?

    I am terrified of making the wrong decision and having to live with the regret for the remainder of my life. I am afraid of all the complications I read about for the neo bladder but the neo bladder seems to be the procedure that returns you to the most normal life style.

    In a perfect world this nightmare would just go away but of course it will not. I will be surfing these forums for hours and days to get some assistance at making my decision.

    Any advise will be most welcome.

    #21810
    Jack Moon
    Keymaster

    Hi Staff

    Sorry you have been diagnosed with MIBC. We do have several members of the forum who do have experience with both diversions, so hopefully they will chime in and share their experiences with you. I was fortunate to be diagnosed with non-muscle invasive bladder cancer in 2005 and have been all clear since 2007. So I personally have no experience with MIBC but would like to offer my support and good wishes to you.
    Best regards,
    Jack

    #21811
    marysue
    Participant

    Hi Staff:

    Welcome to Bladder Cancer Canada but sorry that you have need of us. I second what Jack has said. Unfortunately, I’m like him having been diagnosed at an early stage I was able to avoid the bladder removal surgery and therefore cannot directly give you any guidance about diversion choice.

    However, that being said – I do co-facilitate a support group in Calgary and the main feedback I’ve gotten from my members about diversion choice seems to be around lifestyle – those with active lifestyles and little or no other health concerns seem to favour the neobladder route and those that have more health issues seem to go the outside pouch route. If you need answers fairly quickly, I suggest that you call the Bladder Cancer Canada toll free number and ask to be connected with patient volunteers that have had the surgery with each diversion and have a conversation with each to ask questions and hopefully their answers will be helpful in helping you make the choice that is the most comfortable for you. These volunteers would most likely be able to help you figure out how each diversion choice could work with the activities that you like to do.

    Another topic that was brought up in my support group was about the after post op. Some didn’t want to deal with “training” a neobladder and dealing with any incontinence issues and also possibly deal with having to learn to self catheterize and therefore chose the outside pouch. Another reason for the outside pouch as you mentioned was the potential for fewer complications and a shorter surgery. Some wanted the neobladder in order to having as close to natural what they had before and didn’t like the idea of having to change pouches etc. Either way, there will be lifestyle adjustments. It is a matter of weighing the pros and cons of each and then deciding which is the better route for you.

    I hope my suggestions have helped. Take care and stay in touch. (((((HUGS)))))

    #21812
    Staff
    Participant

    Thank You both Jack and Mary Sue. I will endeavour to take advantage of your suggestions.

    #21813
    SJay
    Participant

    Hi Staff

    Search in this forum under neobladder and you will find several discussions on personal experiences for both options, including my comments.

    I got my neobladder in April 2016 after neo adjuvant chemotherapy. I’m 66 years old and quite active. I ski, hike, kayak, camp and travel. PM me if you would like to chat on the phone about it.0

    I often hear that whichever option is chosen, most are happy with their decision.

    Cheers
    Stephen

    #21814
    DerekA
    Participant

    Hi,

    I too was diagnosed with high grade MIBC Sept 2016. Very devastating!

    While you might be too far along in your treatment process to consider an alternative, I thought that I should mention what happened to me. I met with a surgeon in early Oct 2016, and was ready to discuss a cystectomy and what type of diversion would follow. To my complete surprise, he suggested that I might be a good candidate for chemo/radiation followed by further rounds of chemo. If you search “radiation” in the forum, my complete story is there under DerekA.

    Of course your situation may be completely different than mine, or perhaps that option is not available where you live. (I am in Montreal).

    While I know that my future follow-ups could bring bad news, my life at present is back to normal, and I’m in a pretty good space. This seems to be the process that many on this forum all go through.

    Wishing you good luck…..

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