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DD3's picture
Posts: 134
Joined: May 2013

I attended my wife's six month routine check up.  We were assigned a new oncologist due to our previous one moving on. Anyways, blood work looked good.  WE got to talking to him and he indicated that NCCN guidelines have changed.  In regards to being a cancer survivor... People are considered a survivor at the time of diagnosis now.  I always assumed it was after treatment.  My understanded is this directly affects when your survelliance date starts and stops.

CEA...  My wife's CEA has always been low, even when she was initially diagnosed.  We assumed this was not a good marker for her.  However, the docs always check it.  I finally got a reason why.  The oncologist noted that if re-occurence took place it may not be the same type of cancer that she was initially diagnosed with and CEA may rise.  Hence why they continue to check it.  Interesting...

Last one.  Does anyone on here belong to a site called COLONTOWN?  From what I can gather is a site for CRC patients and was put together by a scientist (who ironically has Stage IV CRC) for information in regards for clinical trials and general support for patients and caregivers.  Haven't quited wrapped my mind around the site.  Just wondering if anyone is a member.




Trubrit's picture
Posts: 5504
Joined: Jan 2013

So happy to hear that your wife is doing well.  It has to be hard moving to a new Oncologist, espeically if your old one is well liked. 

I have heard people here mention COLONTOWN. don't know anything about it myself. 

May 2017 be a wonderful year for you both. 


Posts: 274
Joined: Dec 2013

Colontown is a Facebook group which you have to be invited in to particpate as it's private.  I think the scientist you're referring to is Tom Marsilje but he wasn't the founder of Colontown.  But he is a very active advocate for finding a cure for colon cancer both through outreach/advocacy and his own scientific research.

In regards to CEA and type of cancer, the more accurate description is the genetic make up/mutation affects the effectiveness of the CEA test.  This is why finding a cure for cancer is such a daunting task as for a specific cancer there's no such thing as one tumor cell type that everyone has.  Everyone has a different type and why in addition to the immunotherapy research on going, there's also the push for individual genetic typing of a cancer patient to tailor specific chemo drugs for that person.  As an example, the standard FOLFOX treatment may not be the only treatment used for a specific person as they may have genetic markers which make say a breast cancer drug effective too.

Lovekitties's picture
Posts: 3372
Joined: Jan 2010

here is a web page.  scroll down to "where can I learn more".  There is a link to register for the colon town forum.


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