Postby mike's wife » Wed Jul 06, 2011 12:21 pm
My husband has been diagnosed with Lynch as well. He had a right hemicolectomy last July and Lynch was finally confirmed in January. It's a roller coaster to say the least. Right now we are trying to convince his parents and siblings to get tested, but they are continuing to list all the reasons why they shouldn't. It's very frustrating.
We attended a conference at Mayo a couple of weeks ago about Living with Lynch. It is held every year and I highly recommend going if at all possible. Not sure where you are located, but maybe something similar is in your area.
We are learning as we go. The important thing to remember is that Lynch is not a life sentence. Sure, it sucks, but at least you know you have it and can be proactive in your screenings. Unfortunately, many doctors are not familiar with it so it's up to you to advocate for yourself.
Lynch Syndrome International is a good site for information too.