Sorry to hear your news, and I can understand your concerns. I think that it is important that you consider getting a second opinion at a center that treats LOTS of bladder cancer patients.Yours is not the most common type and not all urologists are really trained to treat it.
I really like my urologist and have full faith in him. However, he told me that if it ever comes to my having to have a cystectomy he would INSIST that I get a second opinion; this is too important not to.
As you may have read, there are three general types of urinary diversions after bladder removal. Here is a good summary of them
my.clevelandclinic.org/health/articles/urinary-reconstruction-and-diversion
The first, the ileal conduit, is the simplest surgery as your doctor has mentioned. And therefore it is the only one that a lot of urologists are competent to do; this is why they "recommend" it....they really can't do the others. In some cases due to the location of the tumors or the poor health of the patient it is the best option. Patients do manage quite well with an abdominal bag.
However, there are other options. The Neobladder is perhaps the most complicated surgery and has been problematic in women. Women often are not as successful as men and can have problems either being incontinent or hypercontinent.
The Indiana Pouch is sort of a hybrid and has been quite successful for women as well as men. Cynthia, our president, has this diversion and if I didn't know her really well I would never know she had it.
There is nothing outside the abdomen.
This is the rest of your life and you want to find a surgeon who can offer you more that the simplest option, if that is what you want. You want to find a surgeon who does MANY of these operations, not just one or two a month....otherwise he is really practicing on you.
You have had your chemo and you do have a little time to do your research and make some decisions about which surgery YOU would prefer. You will be living with it for a long time.
Sara Anne
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