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newly diagnosed; where do I go from here?

8 years 1 month ago #34912 by Humpy
Hey KC, Good to hear from you again. Jim

Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan

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8 years 1 month ago #34908 by kcnorthstar
Joe,
I have not been on the site for a while and just came across your post. In 2006 I had neobladder surgery at the University of Chicago Hospital by Dr. Gary Steinberg. He is one of the best Uro-surgeons in the country. I am more than 4 years out with a neo and can tell you that my life now is exactly the same as before the surgery. Also, like you I live up north. My wife and I live by the Canadian border in Ely Minnesota. I would be glad to share my experiences with you about the surgery and answer any questionas you may have.

KC Madsen

Age 59
DX Jan 2006 - T1B G3
RC - Neobladder June 2006

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8 years 1 month ago #34853 by Patricia
michael..i've just got to say in all my years of monitoring results from different institutions and uro/surgeons i swear i've never heard an unsuccessful neobladder story from IU Simon and Dr. Koch (Koch pouch) or Dr.Bihrle and that includes females. They've got a top secret going there and i wish they'd share.
They successfully cured my son of testicular cancer..in fact created the cure.....i have enormous respect for their capabilites.
pat

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8 years 1 month ago #34851 by michael305
Hi Joe yes I had my surgery done at IU simon cancer center. My urologist is Michael Kock and I am so greatful to have had him do the procedure. I am currently back at work and sleeping about 7 hrs out of 9 with out having to use the restroom now but still needing to wear a pad at night to avoid leakage. I donot need to wear a pad during the day time but we are all not the same.

My surgery was done on sept 3rd and so far so good. I hope the best for you and also please dont worry - you will be 100% after all is said and done. the recovery is the hardest part so walk walk walk and always drink that water. Make sure you ask how much liquids you can drink in a day because you do not want to over strain your new bladder.

I will be more then glad to help you with any advice I can give you just like all the wonderful folks here. have a blessed day and look forward to your new life with no pain.

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8 years 1 month ago #34839 by upnorth1414
Hi Michael,

Glad to hear things worked well for you. Though not my situation, everyone else'e story is very encouraging and supportive for me.

Since you are so recent into this, I would really be happy to hear how you progress since I will be going in soon for the same procedure.

May I ask where you had yours done?

Thanks,

Joe

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8 years 1 month ago #34747 by jj803
Pat and Mike,

I appreciate your kind comments. If my comments help or give solace to anyone, they are well worth the effort. Best wishes to you both,

jj

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