The map of the journey

14 years 5 months ago #28645 by Leigh
Replied by Leigh on topic The map of the journey
Great post Mike!!

Leigh

Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum

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14 years 5 months ago - 14 years 3 months ago #28577 by Patricia
Replied by Patricia on topic The map of the journey
Well the course of action as to chemo before or after sometimes just depends on the Center you go to. There is no second line of treatment that works so if CT/PET shows no lymph involvement and bone scan clean..blood work normal..many will hold off until after cystectomy and removal of many nodes.
I got lucky with my T2 Grade 2..no lymph nodes involved so no chemo.

Pat

P.S. did you read this one?

www.urotoday.com/287/conference_coverage/maratona_urolgica_2009__
bladder_cancer/maratona_urolgica_2009__management_of_muscle_invasive_disease__session_
highlights08182009.html

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14 years 5 months ago #28564 by LeeH
Replied by LeeH on topic The map of the journey
George,

Never uderestimate the power of "dumb luck".

My tumor was large enough to dictate the neobladder, but they ultimately found it had never penetrated the wall and was not invasive. Surgeon, said my odds went from mid 40's to 95 + and I should buy lottery tickets.

Dumb Luck strikes again.

Lee

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14 years 5 months ago - 14 years 5 months ago #28562 by GKLINE
Replied by GKLINE on topic The map of the journey
Mike, you are a one man bladder cancer blabber! And that is ALL RIGHT! The more info out there, the better.
I am happy to know that people are coming to this site for answers. It was only a year ago and I had NO IDEA of what to do. I did not know about this site and came through my episode with good, but very dumb luck.
Patricia, you are the motivator. If anything good comes out of your breast cancer diagnosis(other than a complete cure) It was your statment about Bladder cancer being a forgotten or ugly disease. You seem to have motivated Mike into action. And what action! Lets all get together and realize that the meek don't get the publicity. They may inherit the earth but somebody has to die for another to inherit. We can't let this happen.

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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14 years 5 months ago #28557 by vgau
Replied by vgau on topic The map of the journey
I am still trying to understand all of this since this cancer is new to me, but it sure looks like you put a lot of time into this. Amazing!

Dx 10/5 Non Invasive Papillary

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14 years 5 months ago #28556 by sara.anne
Replied by sara.anne on topic The map of the journey
Way to go, Mike!!

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