Postby orcasres » Mon Sep 23, 2013 1:58 am
I fortunately did not test positive for Lynch, but my surgeon, the pathologist, and the genetic counselor were all sure I would be, so I spent a lot of time researching between the time I was tested and the time I got the test results, which was nearly 3 weeks later. One thing to be giving serious thought to is determining which of your relatives will need to be tested. My brother had died of a heart attack at age 47 so if I had been positive, it would have been necessary to test my brother's children as well as my own. My mother would probably have been tested as well, however she is in her 80's and somewhat paranoid about health issues, so I am not certain we would have had her tested at that point. There will probably need to be testing done for your parents and then siblings. Because your test will have defined what genes are involved, the testing for family members will be more targeted (and less expensive as a result).
One point that the genetic counselor made to us is that while health insurance cannot be denied due to Lynch syndrome, life insurance can. Our sons were in their 20's when I was tested and if it had been positive, we would have given them early Christmas presents of life insurance policies BEFORE we got them tested for Lynch.
Your genetic counselor will give you good information; you might be able to get some information before the appointment if you requested it. The next most common Lynch cancer is uterine and I was told that risk was significant. I was past the point of having any children, so it was recommended that I consider a hysterectomy if I was positive.
I am sorry that you are facing this, but there are several folks on this board with Lynch and they will have more complete information to offer.
Best wishes, Lois
63 yo F
Colon resection Sept. 2010
pT3N0M0 Stage 2A
Medullary Tumor 6.5cm long
Lymphovascular invasion
Lynch negative
12 FOLFOX 11/2010 to 5/2011 8 w/Oxi
NED so far