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Neo questions

11 years 3 months ago #24403 by Patricia
Yes i did the same thing Mike. When i was diagnosed in 2002 Dr. Schoenberg directed me to the web/cafe site and at the time there was no forum..just blogs...but Wendy put me in contact with several people who were of great help to me in sorting out my decisions and there was excellent material to read on the site. After my surgery i continued to keep in contact with a couple of people just as reassurance that my tempermental Indiana Pouch was doing what was normal. I kind of came back to the site after my husband passed away in 2006 and found a forum and realized i could maybe give back some of my knowledge garnered over the previous years.
I would hope that more come back.......i think it gives hope.
Pat

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11 years 3 months ago #24396 by mmc
Statistically, the 5 (and 10) year survival rate is VERY high.

I agree with Pat. It seems that it would make perfect sense for people to drop off this site after a couple/few years. If one finds themselves cured, they would potentially want to put it behind them.

It's a great tool when you need it and many enjoy giving back by contributing and helping others long after they have been through the experience. But it also does make sense that people would want to move on at some point.

Personally, after I had my first bout with bladder cancer two years ago, I was all over this site. I read everything here as well as researching everything I could. Then, after a few "all clears", I dropped off completely. When it came back, I came back. Everyone handles things in their own way. I expect that if I have a few years of "all clear" now that I have a neobladder, I will probably drop off again. The questions I asked and answers I recieved as well as answers I gave others will remain and hopefully help others with similar questions though. However, at some point I hope and pray to put cancer behind me.


My 2 cents.... :)

Mike

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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11 years 3 months ago #24394 by Patricia
Sorry Sydelle....didn't mean there were not survivors past the 2 or 3 yr mark...just that they don't come back to the site after that period of time usually. I wish they would..........Pat

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11 years 3 months ago #24391 by sydelle
I hope I misunderstood your answer....are you saying that the patients on this site with neobladders, have not had survival rates past 2 to 3 years ? Do we have survivors, on this site who HAVE survived, past 5 years? Sydelle

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11 years 3 months ago #24377 by Patricia
Just found this study on the different neo's published today
http://www.urotoday.com/index.php?option=com_content&task=view_ua&id=2220331
Free to register...........Pat

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11 years 3 months ago #24354 by Patricia
Well thats one weird study from France. I mean to be a T2 or T3 and wait ll months for a cystectomy? No mention of chemo. Thats crazy. I didn't see a date on it. Pat

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