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Bladder Cancer Support Forum
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Newly Diagnosed

The map of the journey
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TOPIC: The map of the journey
#28474
Re:The map of the journey 8 Months, 4 Weeks ago  
I just reviewed your MAP. It is almost perfect in its simplicity. I went through the system so quickly, I never had time to analyse the journey.
I can't find fault with the journey. I guess I was stunned to see how far along the path I went so quickly.
Where was this chart when I started? We should make sure this gets into the hands of every "newly diagnosed"
George
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I'm BACK! Look out world!
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Gender: Male Location: JOHNSTOWN, NY Birthday: 04/06
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You can show them how to color; and all they want to do is eat the Crayons

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man!
 
#28476
Re:The map of the journey 8 Months, 4 Weeks ago  
Thanks George! That's what I'm hoping....to get it into the hands of every newly diagnosed person.

Since so many people, when they first learn of bladder cancer, browse places like this without signing up or asking questions, I'm hoping to figure something out to get it someplace (or some places) that new folks will find.

Thanks again!
Mike
mmc
Mike
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Gender: Male mikemcgarry00 Location: Colorado Birthday: 04/07
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Age 51
TUR 10/31/06 dx CIS non-invasive
bcg dropout after 2 treatments.
mitomycin dropout 3 treatments.
9/19/2008 TUR/TUIP dx Invasive CIS
10/8/2008 RC neobladder-Vescica Ileale Padovana (VIP)pouch
  
#28479
Re:The map of the journey 8 Months, 4 Weeks ago  
It is amazing to see that this post has had almost 2000 views in just over two days.
inTransition
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Diagnosed Stage 3 March 09.
RC August 09 at MD Anderson, TX
Ileal Conduit (Bag Lady)
Age 52
  
#28483
Re:The map of the journey 8 Months, 4 Weeks ago  
Another update to the flow. This is version 4 of my Bladder Cancer Treatment Guide for Patients

Changed "Invasive" to "Invasion into muscle" as some pathologists will label lamina propia involvement (T1) as invasive. While those can be worrisome and require close follow up, RC isn't always indicated.

Also changed the "recurrence" note box to indicate that any recurrence of high-grade should trigger a strong consideration of an RC as a course of treatment.

Click on the file attachment (not the image) to get a pdf version of the file that is much more readable than the small image posted here.

To download the file, either:
-Right click on the file name "Bladder_Cancer_Treatment_Guide_v4.zip" in the grey box below and select "Save target as" and save it to your desktop, or
-Left click on the file name "Bladder_Cancer_Treatment_Guide_v4.zip" in the grey box below and select "Save" if prompted or just open the pdf file when it comes up in the zip folder.

Mike
File Attachment:
File Name: Bladder_Cancer_Treatment_Guide_v4.zip
File Size: 41405
mmc
Mike
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Gender: Male mikemcgarry00 Location: Colorado Birthday: 04/07
Last Edit: 2009/11/17 13:14 By mmc.
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Age 51
TUR 10/31/06 dx CIS non-invasive
bcg dropout after 2 treatments.
mitomycin dropout 3 treatments.
9/19/2008 TUR/TUIP dx Invasive CIS
10/8/2008 RC neobladder-Vescica Ileale Padovana (VIP)pouch
  
#28500
Re:The map of the journey 8 Months, 4 Weeks ago  
Mike,

Looks good. Should be real helpfull for newly diagnosed people.

KC
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Gender: Male Location: Ely, Minnesota Birthday: 06/01
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Age 58
DX Jan 2006 - T1B G3
RC - Neobladder June 2006
  
#28552
Re:The map of the journey 8 Months, 3 Weeks ago  
I put links on webcafe and BCAN and a couple of other sites that said they were bladder cancer support.

The editors at Urotoday liked it and they are considering publishing it.

I also put it up on Wikipedia under "Bladder Cancer" in the treatment section.

While I was there I also added a link to the ABLCS main page in the "Links" section.

I saw another support group there and figured it wouldn't hurt to have the ABLCS site referenced as well.

Mike

PS: My urosurgeon also liked it and said he's going to share it with patients and other physicians.
I finally found something I can use to spread the word! It's feels good!
mmc
Mike
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Gender: Male mikemcgarry00 Location: Colorado Birthday: 04/07
Last Edit: 2009/11/05 15:57 By mmc.
The administrator has disabled public write access.
Age 51
TUR 10/31/06 dx CIS non-invasive
bcg dropout after 2 treatments.
mitomycin dropout 3 treatments.
9/19/2008 TUR/TUIP dx Invasive CIS
10/8/2008 RC neobladder-Vescica Ileale Padovana (VIP)pouch
  
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