newly diagnosed; where do I go from here?

13 years 5 months ago #34912 by Humpy
Replied by Humpy on topic newly diagnosed; where do I go from here?
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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13 years 5 months ago #34908 by kcnorthstar
Replied by kcnorthstar on topic newly diagnosed; where do I go from here?
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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13 years 5 months ago #34853 by Patricia
Replied by Patricia on topic newly diagnosed; where do I go from here?
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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13 years 5 months ago #34851 by michael305
Replied by michael305 on topic newly diagnosed; where do I go from here?
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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13 years 5 months ago #34839 by upnorth1414
Replied by upnorth1414 on topic newly diagnosed; where do I go from here?
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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13 years 5 months ago #34747 by jj803
Replied by jj803 on topic newly diagnosed; where do I go from here?
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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