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I Feel So Stupid...

6 months 4 weeks ago #57382 by sara.anne
Yes it is a lot to think about and it is an important decision for the rest of your life . Don’t let me or anyone else direct you in a way that you do not want to go or that you do not feel comfortable with In the end it is your decision . As I believe someone else mentioned, from our experience here on the forum, people appear to adapt to whatever diversion they choose and live a full and healthy life You will too

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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6 months 4 weeks ago #57381 by Shmoops
Thanks Sara-Anne,

You've given me a lot to think about.

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6 months 4 weeks ago #57380 by sara.anne
Hi there! Sorry you are facing this, but glad to hear that you are at a really good place for treatment. Like Alan, I have not faced cystectomy (and hope I never have to) but have already planned what I would do!! Cynthia, the President of the American Bladder Cancer Society, has an Indiana pouch. A piece of intestine is re-purposed as a new bladder/reservoir as in the neobladder and the urine is routed via a stoma in the navel or near by. You use a catheter in the stoma every four hours or so. I have traveled with Cynthia and if I didn't know and wasn't interested I would never know she has it. She swims, bathes, scuba dives....no outside appliance and this diversion doesn't have the potential complications that the neobladder has. Anyway, that is what I would want and you might want to consider it.

Yes, the surgery for the ileal conduit is the simplest, but at your age and assuming that you are healthy that shouldn't be a major consideration. As Alan said, (I usually agree with him) often this is the diversion that the doctor feels most comfortable with. You do not want a surgeon who is not comfortable with the diversion you choose and does not have the expertise with it.

My urologist has told me that if it ever comes to a recommendation for cystectomy he would INSIST that I get a second opinion. This might be a good idea in your case even if your insurance will not allow you to go to another site. You could request an opinion from another urologist in the same department who has had LOTS of experience with bladder cancer surgery. After all, YOU or YOUR insurance will be paying big $$$$ for this procedure and you have the right to select what is right for YOU. I have a friend who recently switched doctors in the same practice and it was no problem at all...just a better fit all around.

Whatever you chose, good luck!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: Shmoops

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6 months 4 weeks ago #57379 by Shmoops
Ange,

I am leaning to the bag. Having pee trapped inside of you that you can't push out sounds awful.

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6 months 4 weeks ago #57378 by Shmoops
Alan,

Thanks for the web addy. It was very helpful.

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6 months 4 weeks ago #57377 by Ange
I am getting the bag,,I do. It want to worry about complications -and I have been reading on this. I suggest you think more about complications in future then make decision. Read and watch videos. Etc.

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