neobladders over the years

13 years 9 months ago #33212 by Patricia
Replied by Patricia on topic neobladders over the years
Hmmmm funny you should bring it up sara anne...here's a study by MSK in Urotoday saying the same thing!!
www.urotoday.com/index.php?option=com_content&task=view_ua&id=2230670
free to register and read
pat

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13 years 9 months ago #33211 by sara.anne
Replied by sara.anne on topic neobladders over the years
Oh Pat, please do continue posting these. It is the best we have to go on and maybe it can spur some real research. And we do NOT need just "happy" stuff. If that is what we want, we don't belong in this society. We want reality and the best information possible...such as it is.

Sara Anne

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

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13 years 9 months ago #33198 by Patricia
Replied by Patricia on topic neobladders over the years
Yes i saw that Mike...I actually didn't think it was depressing..just perplexing. I thought it would be a good discussion for the group as i was not looking at it in a personal way. I can see why this might be the case in some socio-economic conditions but who knows maybe we have a set of genes that are a bit different that changes the way we react to say BCG .......its just a big can of worms.
There's also a discussion on rating your doctors and gee guess what..everyone no matter where they were on the blc scale rated their doc a 10plus.......Well yeah...if you didn't why would you be with them. Thats a bogus study.
and i'm a great driver!!!
:blink:
pat

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13 years 9 months ago #33195 by mmc
Replied by mmc on topic neobladders over the years
I dont mind if you keep posting them. Usually, the ones that you find interesting are interesting to me also.

A preponderance of the research is lackluster at best but it does give some things to think about (sometimes).

I saw another board where someone posted the thing about women and bladder cancer and the person posting was given a whole rash of trouble by people saying don't post this stuff because it isn't "positive". I suppose there needs to be a board somewhere called "Bladder Cancer Polyanna's" for only good news and people who want to stick their heads in the sand.

My view is don't read the research if you don't want to know. Don't believe the research if it wasn't conducted properly or just doesn't make sense. Just because something was 'observed', it doesn't necessarily mean it is a cause or even related. You still need to use your own brain to assess the voracity of research.


I'm sure glad the group here isn't like that!!!

Mike

ABLCS: Real stories and real facts from real people for people who want to know! :)

PS: Be very careful of research based on surveys. For example, did you know that of all drivers surveyed over 80% are above average drivers. :)

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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13 years 9 months ago #33188 by Patricia
Replied by Patricia on topic neobladders over the years
I can quit posting these......i just thought they were fuel for thought. I answer quite a few of them..never get an answer back.
pat

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13 years 9 months ago #33184 by sara.anne
Replied by sara.anne on topic neobladders over the years
Yet another review of the literature. Unless we go to the original sources, they may be comparing apples to grapefruit. Isn't ANYONE doind real research?

Sara Anne

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

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