Radical Cystectomy - Options

Hi, I am new to the group having been diagnosed in mid November with bladder cancer. It is in a diverticulum attached to my bladder which gives it an extra twist, however the overall prognosis is that everything needs to come out - bladder, prostate, lymph nodes, and seminal vesicles. Despite the obvious shock I am positive mentally as just need to do what needs to be done, as at 54 I am not  prepared to give up. However one of the big decisions I face is the options for how to urinate in the future. There are fundamentally two choices - urostomy bag or neo bladder. Both have pro’s and con’s from the research I have done. I will have to be partly guided by my surgical team but do have a say ultimately and am interested in talking to people who have been through the operation, discussing which way they went and how they feel about their choice now. Sorry for the long blurb but as we all know on here I am sure - so many questions !! 
Thank you to anyone prepared to share their feelings on the subject. I really hope and intend once I am through this to somehow help others on the journey, when they need it.

  • Andy001. In-between Christmas & the New Year I will give you my number. So you can talk to him on a more personal level.  Enjoy your Christmas.  Try to be as fit as you can. My husband came out with tubes everywhere including a stomah bag fir his kidney stents. After a month he went back in & had them taken out & then started urinating in the normal way. Then bladder training starts xx

    Kimdav

  • Your so right. Thankyou Jane x

    Kimdav

  • Kimdav - thank you. Merry Christmas to you both. Will catch up

    soon. Andy

  • Hi Andy001.
    54 was my age last year when I was diagnosed with stage 2 grade 3 bladder cancer.
    My prognosis was the same as yours and everything was removed (bladder, prostate, lymph nodes, and seminal vesicles), in June 2020.

    Roll on 18 months and life is good.

    I opted for a Neo Bladder and am so happy with that choice.
    I always stress that this is a very personal decision and there are many factors that might make it right for me but wrong for you.

    But I can only tell you how it is for me. I was a healthy, fit 54 year old when diagnosed. Not overweight, playing footy and golf and a non smoker. All these things may have made it easier for me. Your circumstances may be quite different.

    Now the only difference is during the night I have to wake at least once. But I probably did that anyway. And now I get the urge to wake before my alarm goes off. I do not wear Depends (nappies) at night. Just boxers, and very rarely a dribble may escape, which doesn’t even hit the sheet.

    I was back playing golf 11 weeks after my Radical  Cystectomy. Football a month later.

    Happy to give you anymore information, including the more personal aspects.

    Maybe I was extremely lucky that everything aligned and I had a wonder surgeon, but I am living proof Neo can be so amazing.

    cheers
    Chasam