October 1, 2007 at 2:44 am #17098jmoneypennyMember
Hi Marion and Peter,
I would add that people with autoimmune hepatitis should be screened much more diligently – and probably any type of hepatitis. I recently had jury duty and in the course of conversation, one of my fellow jurors mentioned she was on medication for autoimmune hepatitis (which is pretty rare – maybe even more so than CC). Everyone was very surprised when I burst into tears and begged her to get CAT scans and/or MRIs, biopsies every 6 months. My mother was never informed of the very STRONG connection between AIH and all types of liver cancer — anything that causes scarring of liver tissue can and most likely WILL turn cancerous. My mother had blood tests every 3 months, and when the blood tests came out a bit abnormal, she only had 3 months to live.
Screening and early detection and public awareness – that’s what helped the breast cancer cause become so successful and hopefully we can do the same for cc. Thanks to everyone here for all their efforts and wisdom.
-JoyceSeptember 30, 2007 at 6:59 pm #17097marionsModerator
I agree with you on everything. This cancer needs to be recognized and addressed, and the board members are spending countless hours in their quest to fulfill this goal.
Unfortunately, at this time, this is the only screening tool available and that only if the patient either shows symptoms leading the physician to initiate such testing, or if the patient him or herself requests such testing to be performed.
Hoping for all of us to find more answers thereby forcing the medical community and researchers to focus on the dire need for intervention with this disease.
MarionsSeptember 30, 2007 at 1:21 pm #17096peterMember
Well considered advice but how many people who do not have CC in their families even know what it is much less would consider screening for it.
The CC foundation formed by the founders of this website offers our best hope of educating both the public and espeically the medical community so that detection, treatment, and eventually the cure we all dream of can become reality.
I offer this as unabashed encouragement for all of us here to become aware of the foundations work and potential. These folks are all volunteers.
-PeterSeptember 29, 2007 at 7:15 pm #727marionsModerator
Presently, I am not aware of any testing sensitive or specific enough for early detection of CC however, there are certain things to consider:
As you may know, CC is associated with inflammatory bowel diseases, history of parasitic disease involving the bilary system, and rarely with Lynch syndrome (a genetic colonic polyposis syndrome). Patients with a background of any of these factors are at somewhat higher risk and perhaps may be warranting more than basic blood chemistries as a method of screening. Of course, those with symptoms (pain, jaundice, etc) warrant more investigation as well.
As for basic screening, fractionated (total and direct) bilirubin, alkaline phosphatase, GGTP, AST, ALT are sufficient.
For those at higher risk, tumor makers such as CEA and CA 19-9 could be included. An ultrasound of the abdomen would be helpful in this group and possibly ultimately a triphasic CT of the abdomen
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