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Unhappy with ileal conduit

1 year 6 months ago #57066 by chnayeri

Thank you for responding....!!


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1 year 6 months ago #57059 by sara.anne
Hello, Chris! First, you may notice that I moved your post to its own thread, in a place where more people may see it. Second, congratulations on the news that it appears that they got it all!

So sorry to hear that you ended up with a diversion that you feel does not suit you. It seems that in many cases the urologists do not do their best to match the diversion to the patient.

Please remember that we are not doctors here, so take our advice accordingly. If you are really convinced that you need to change your diversion, you should seek out a major center that specializes in bladder cancer diversions and request a second opinion. This would be complicated surgery and you want a place that handles such cases. Not knowing where you are located, I would just suggest as examples the University of Chicago, USC, Stanford, MDAnderson, Johns Hopkins and Memorial Sloan Kettering. There are others.....you might want to inquire via telephone conference or email to get started.

Good luck

Sara Anne

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

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1 year 6 months ago #57058 by chnayeri
New to the forum, male great shape it has been 6 weeks since my surgery, I don't like my choice I made, I should have gone with a neobladder, but I did not do enough research, I guess I was in shock. I don't like the ileal conduit or bag. I want to go to Indiana pouch but not sure. Doctor says he can do that after 2 years. the Stoma Nurse being was very against neobladder and kinda scared me. But I wanted to get to my kids and wife as fast as possible, made a bad decision for all the right reasons!!

any input from anyone would be great, if this is the right forum.

Bladder Cancer Very Very aggressive, They think they got it all, CT scan negative now PetScan tomorrow.

Or you can send me to the right forum at a loss right now.

thanks, Chris

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