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Lynch syndrome testing

Tresia23's picture
Posts: 75
Joined: Dec 2010

Hi, I would like to ask if it is possible for this type of cancer to be diagnosed from tissue that was taken during staging for endometrial cancer? I have been sent by my gyn/onc to gastro for review of new symptoms continuing since last October. He opened up this discussion with me and now I am going for endoscopy and colonoscopy in a month. I told him my pathology or tissue samples had been saved in case of recurrence. He made a note of it and I think he is going to talk to my gyn/onc about this. Thanks,

fearlesshoneybadger's picture
Posts: 9
Joined: Feb 2012

It's eerie to see discussions popping up (again) about Lynch syndrome. I was solicited at a recent gyn/onc checkup for a dna sample for the Colaris test (http://www.myriad.com/products/colaris.php). I have no family history of cancer (endometrial, colorectal or otherwise) and the offer was presented as a "your insurance will pay so why don't you go ahead and get the test." So I did.

The Colaris sample process was simple: swig some mouthwash and spit in a tube. They did not require any of the tissue collected during my hysterectomy.

P.S. I was told by one of the office staff that if one's insurance plan does not cover the test, the company will work with that individual to find an acceptable payment on a sliding scale that will (in her words) "make you comfortable." I suspect the company is collecting data on the test or perhaps my center is because they're a GOG study site (though I hadn't signed consent forms so I'm not sure). In any case, if there are risk factors in your family or history, it would seem worth getting tested.

Shell bug's picture
Shell bug
Posts: 76
Joined: Nov 2011

Lynch Syndrome isn't a type of cancer. It is a genetic disorder that makes a person more likely to get certain types of cancer, a lot of types of cancer. It has to do with malfunctioning genes (quality control is a good way to think of it) that do not get rid of cells that divide improperly. The improperly dividing cells continue to increase and you get cancer.

I was tested by a blood test and will get my results on March 13th. I was encouraged to get the blood test because, yes, tests were performed on my tumor and those tests showed abnormalitites. Cancer, by definition, is abnormal so more testing is required to confirm a diagnosis of Lynch. From what I understand, the inital test is fairly expensive but testing for other members of your family is less expensive.

If you are younger than 40, a genetic connection is often suspected. I am 38 and in very good health with zero other risk factors for endometrial cancer. So, even without a family connection, you may be asked to undergo testing.

If you go to the colon cancer discussion boards and search Lynch Syndrome, you will find more information. Also, Lynch Syndrome International is very informative.

Goodluck to you.

Tresia23's picture
Posts: 75
Joined: Dec 2010

Thank you for the information. I will definitely have a look at the websites.

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