new member with mainz pouch 1
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Homepage – Forum › Forums › Muscle Invasive Bladder Cancer › new member with mainz pouch 1

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  • December 12, 2016 at 2:24 pm #8461
    lor
    Participant

    I had breast cancer with lumpectomy and radiotherapy with treatment finishing Sept 1st., bladder cancer and removal of bladder occured 12 weeks ago, i have a mainz pouch 1, i am the only person in Cyprus with this and my Doctor Proffessor Ali Onder is lucky to have me as his guinnea pig

    December 12, 2016 at 9:04 pm #21254
    marysue
    Participant

    Hi Lor!

    Welcome to Bladder Cancer Canada but sorry that you have need of us. You’ve had quite the journey with having had more than one type of cancer.

    I know the feeling of being a medical guinea pig. I was born with birth defects that included a narrow urethra and a twisted and narrowed left ureter. My left kidney is also smaller and a bit deformed in shape but has a fair bit of function. Thankfully my right side is okay. In 1964-5, I underwent three almost back to back surgeries to correct everything plus remove kidney stones that had formed as a result of the abnormalities. My urologist literally grafted a layer off the outside of my bladder to create a new ureter. The surgery was considered experimental but back then the only other alternative would have been to remove my kidney and ureter. It did save my left side kidney and ureter. Nowadays, they would just insert stents into the ureters which is obviously less invasive.

    If you are willing and able to share your experiences, that would be great. I don’t know of any other person on this site who has the Mainz Pouch 1 diversion. In Canada, urologists seem to mainly offer the choice between the neobladder and ileal conduit (outside pouch). We only have one member that has the Indiana pouch which in case you’re not familiar is like a combination of the two. A person has an internal pouch but also a stoma like the outside pouch system and self-catheterizes through the stoma every few hours to drain the urine. Not too many Canadian urologists have the training to do the other methods. Hopefully that will change at some point and give patients more options.

    Stay in touch and let us know how your are. Take care. (((((HUGS)))))

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