Sorry you got such difficult news today. Please keep in mind that a positive test result isn't a death sentence. Keep doing your screenings and reach out when you need support. :)
Christie

Sorry to hear about your news. There's a lot of positive research out there on the ability of annual colonoscopies to help reduce the risk of the return of regionally advanced cancer. Here's one article I came across while researching my options:

http://www.cghjournal.org/article/S1542-3565%2809%2901013-1/fulltext

Hang in there and please stay on top of those exams!

welsome to our group. I am so pleased that so many have found this helpful. When I was told I had LS, I started this group for so many reasons and have received so much from it. Thank you all for being there for everyone who is seeking answers and to share experiences. imsb1

My dad found out that he had Lynch Syndrome this past December and until my medical insurance comes through in January I cannot get tested for it. These past few months have been crazy and scary and I feel like I am living on death row and have been doing everything on my bucket list since I got to see how terribly sick my dad got. So far I've spent a week in NYC, a week in London and I am going to Germany in December for two weeks. Next years list includes a week in San Francisco, a week in San Diego and a week in Naples, Italy and Octoberfest in Germany. I am so very scared when I get down to just thinking about it. This is scarier than Aid's/Hiv or Ebola. By next year I might be in your shoes. I have a 50-50 chance of that.

Well the good news it certainly isn't as scary (in my personal opinion) as HIV or Ebola. The key is keeping current on your screenings, exercising (which I need to be better about!) and eating a well balanced diet (which I also need to be better about!). I am glad you have the freedom and ability to cross things off of your bucket list, but please don't feel as if it is a death sentence. Many have survived and live sling fulfilling lives because they were diligent in their care for Lynch. God bless and good luck! Here is hoping your results are negative!

*are living (stupid phone...)

I've been diagnosed about 9 years. MSH2. I already had breast cancer, so had a mastectomy. I had a hyst. for other reasons and they found contained uterine cancer (great news!). I had a salpingoopherrectomy, but have 4 grown children, and without a uterus, even if I lost my mind, I am too old for babies (except grands). I had my large intestine removed, all but 6", and had a reanastemosis, so no bag. I eat gluten free diet (we have celiac disease), and am having heightened sensitivity to it, so am seeing the G-E to see what's up. I also had 2 small strokes, not related to Lynch. And, 3 heart blockages and one stent, not related to Lynch, Except for 24/7 vertigo (not related to Lynch but small vessel ischemia from heart blockages), I consider myself healthy. As to it being a death sentence, not one day have I felt like that.

Looking at my family history and the extensive Lynch/celiac history we have, the average age of death is 85. A couple died in WWII, a couple have made it to their mid 90's. Yes, they all had cancers, but they all LIVED their lives with great joy and a lot of grit.

Blessed to here (I'm only 62),and being a survivor of lots of chronic illnesses, I intend to be here at least another 25 or 30 years. I want to see how my grandkids turn out!

Hang in there, those of you who are positive. And thanks for the site.