Lynch Syndrome

The Colorectal Cancer Coalition offered a webinar back in December 2010 about Lynch Syndrome and at risk families.

Dr. Henry Lynch, a pioneer in genetic cancer research, and Kate Murphy, a Lynch syndrome survivor and Director of Research Communication for the Colorectal Cancer Coalition, in a discussion about at-risk families. The webinar runs for about an hour.

http://fightcolorectalcancer.org/awareness/webinars/does_colorectal_cancer_run_in_your_family_12610

Comments

  • 6 Comments sorted by Votes Date Added
  • DMMDMM Community Member
    I also just found a good website for Lynch Syndrome.

    Lynch Syndrome International
    http://www.lynchcancers.com/
  • Thanks for this! I have talked with people from Lynch Syndrome International but didn't know about the Colorectal Cancer Coalition!
    Its good to have people stand by you when you realise you have not just a family history of....... but you now have a genetically confirmed mutation. Sometimes I think I medically discovered my "fate". Don't get me wrong, I'm so glad to have done the testing! I am determined that I will be the one in my family that lives! You know... unless I do something stupid like hanglide over rush hour traffic. I guess the support is in the knowledge that others watched their family die young and we are still survivors. I got the info to my 5 remaining relatives when I got the news. I was practically shouting," Go to your Drs! The last of us remaining will live! Don't worry about me, go get tested!" I leave it up to them though b/c some have said they don't want to know. Cancer sucks! But lynch cancers are a mind wrecking light engulfer that is a nail in your mind for life... and you never know when the next nail will be hammered in.
  • DMMDMM Community Member
    Melissa Tweed;1930 said:
    Thanks for this! I have talked with people from Lynch Syndrome International but didn't know about the Colorectal Cancer Coalition!
    Its good to have people stand by you when you realise you have not just a family history of....... but you now have a genetically confirmed mutation. Sometimes I think I medically discovered my "fate". Don't get me wrong, I'm so glad to have done the testing! I am determined that I will be the one in my family that lives! You know... unless I do something stupid like hanglide over rush hour traffic. I guess the support is in the knowledge that others watched their family die young and we are still survivors. I got the info to my 5 remaining relatives when I got the news. I was practically shouting," Go to your Drs! The last of us remaining will live! Don't worry about me, go get tested!" I leave it up to them though b/c some have said they don't want to know. Cancer sucks! But lynch cancers are a mind wrecking light engulfer that is a nail in your mind for life... and you never know when the next nail will be hammered in.

    On this website http://www.raisetheredflag.org/lynch-syndrome, you can search for doctors who do the genetic testing for Lynch Syndrome and other hereditary cancers.
  • I did my test through myriad. They have 2 yr no intrest payment plans! If you're late they really didn't mind either! The people on the phone seem to care! I really want to get my brother tested though. He just has special circumstances that make it harder. One day I will be able to put his mind at ease and pay for it myself I hope.
  • DMMDMM Community Member
    Survey of Colorectal Cancer Survivors with Lynch Syndrome by M.D. Anderson Cancer Ctr

    I saw this post on M.D. Anderson's Cancer Center News Facebook page.

    Are you a colorectal cancer survivor with Lynch syndrome? Are you English-speaking and over 18? If so, you may be eligible to participate in a new MD Anderson Cancer Center mailed survey study on survivorship and quality of life.

    The survey takes approximately 45 minutes and you will receive a $10 gift card for your time. Please contact Dr. Allison Burton at (713) 792-6280 or at [email]aburton@mdanderson.org[/email].

    For more information:

    http://clinicaltrials.gov/ct2/show/NCT01126840?term=lynch+syndrome&rank=9
  • Thanks for posting the info about the clinical trials! I called MD Anderson last week after seeing this, dug around a little and sure enough, I qualify for two - one for women with Lynch and another for women with Lynch and a Lynch cancer. If we have to live with this genetic mutation, something positive has to come out of it for the next generation. Thanks again!