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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.

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  • #8150
    Nick M.

    Hi All, my name is Nick from Georgetown.
    Just joined and want to introduce myself.
    I have muscle invasive Type 2 BC and have started my first round of chemo prior to having my bladder removed in February. I am blown away by the care, various support groups both government and non-government funded, friends, family and great sites like this one. It is really, really nice to know that people are there for you.
    Having said all that… I have come to terms (for the most part) with my situation. My biggest struggle now is with the choice of diversion. I think the sooner I settle this on my mind, the sooner I’ll rest easy. I am 61, in good shape, active, retired and in great health (otherwise). From reading on this forum it seems that in the end all are satisfied with their choices. The neo bladder sounds great but I’m worried about complications both short and long term. My thinking now is that maybe the external bag choice is simpler and with less potential complications ?
    Yes, I am confused.


    Hi Nick, I was diagnosed Stage 2 BC in January 2013, and had my bladder etc removed in June of 2013. I was 52 and healthy otherwise. Also did 3 rounds of Cis-Gem chemotherapy (all in Hamilton). If you have questions about that feel free to ask. Though my surgeon had to do a little extra design work during surgery, I received a neo bladder. I attest to the long and sometimes slow recovery, but I returned to work 3 months post surgery. I can also let you know about how recovery was, but to the point of your question. The surgeon told me my surgery and recovery were almost textbook, and so has the period since been. Not to say there have not been minor complications.
    1) During my recovery period, I had two fairly significant infections due that landed me back in hospital. This was due to not being experienced enough to be able to fully empty my neobladder. So while entirely doable, it is a learning curve. I actually went to a physio appt to get some help in determining my pelvic health – with a neo those kegel exercises are important, as is having good pelvic health, which fortunately, I have.
    2) I have had an issue with scar tissue growing back over the sphincter muscle, that guards the entrance to the urethra from my neo bladder. When that happens it constricts the flow, leading to retention, leading to mild infections = increased mucus = blockage. I went back to my surgeon 3 times this past year to have a 30 min procedure done to open it up, under anesthetic. However, since learning to self cath 5 months ago, I have not had to go back to the surgeon
    3) Self Cathing – while I would not call it a complication, it took me a bit to get over the psychological hurdle of doing it myself. Once I did, it’s fine. Its also a lot easier when you don’t have a prostate anymore – cystoscopies are easier now too. I now self cath a few times a week to keep the scar tissue from growing back.
    4) Continence – many get back daytime continence, while nighttime can be a bigger challenge. I want to encourage you that I have almost no problem in this area as of yet, though I have had a few nighttime accidents when experiencing infection and retention. But very few. So there is hope that might be your experience too.

    All that being said, I am now almost 17 months post surgery, which means I am 17 months cancer free. Feeling great. Back to an intensive work schedule. Travelled to Europe for three weeks this past summer with my wife with no issues. I do carry a “just in case” bag when I go out of town for more than a few hours. Life is back to normal, albeit a new one. I am very happy with my neo. If I can be of any other help, please feel free to private message me, happy to help a neo bladder buddy, if that is what you end up deciding!



    Welcome Nick
    You are now a member of a culb no one wishs to join.l’m 58 and have been cancer free for 17 months, and have an illeal conduit(bag). Unable to get a neo because of complications from previous surgeries. Life with a bag is different, there is some change nessessary but not unmanageable. There is cost for appliances, planning to get them, and the all important emergency bag.Learning to change the applances is easy and fast.Skin care is most important issue and is learned quickly as well.I work , play hocky, weight train, drink beer and live a full life.
    Please use the bars at the top of the page, to get info you my find useful in making this all important decision. No matter what you chose you will ajust and your life will return to an almost the state.

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