Anyone diagnosed with Lynch Syndrome?

My 22 year old daughter was diagnosed with Stage 2 Colon Cancer and had a grapefruit sized mass removed along with the ascending colon back in September. THe surgeon felt that she had most likely removed it all. It was not through the lining of her colon and 40 lymphnodes that were tested were clear of cancer, but the size of the tumor and the fact that the cancer was working it's way towards the lymphnodes are both considered to be "risk factors", and a 12 month round of chemo (fulfox/oxcaliplaten (SP?)) is typically suggested with these risk factors present in stage 2.... Because of her age, she was tested for Lynch Syndrome, a genetic mutation. She tested positive. There are conflicting studies and suggestions for the effectiveness of chemo with Lynch Syndrome present....so, the Oncologist can't recommend fully, either  (chemo, or no chemo) Totally frustrating as she is left with making the decision as to wether to put herself through 6 month (12 treatments) of chemo, or not. She is 3 treatments in, and a bit behind schedule due to elevated liver levels requiring her to take a break, and start again after reducing the dose in half. Which has left us wondering if there really is a point to all of this, since it's effectiveness is unknown. Just wondering if there is anyone in the group with Lynch Syndrome who we could talk to. Thanks ~ Allison