Anyone have lynch syndrome?

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Mommyathome
Mommyathome Member Posts: 1,111

so, I was diagnosed with dcis in 2013. Now I found out after colonoscopy they found pre cancerous polyps. I'm 44 years old and have colon cancer, breast cancer, and ovarian cancer in my family. I did some genetic testing and it came up with variant for msh6.... if I'm saying that correctly. My gi doctor thinks I have a variant of lynch syndrome. Do any of you have lynch syndrome? How was it diagnosed? What do you do for it

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  • lekker
    lekker Member Posts: 594
    edited April 2017

    I tested negative for any mutations in the Lynch syndrome genes but wanted to make a suggestion - please speak with a licensed genetic counselor. A good one should be able to explain all of your options for enhanced screening and prophylactic surgeries based on your specific mutation as well as your personal and family histories. Many GI doctors don't know all of the ins and outs of genetic issues but a LGC will.

  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited April 2017

    I don't have Lynch Syndrome, but I did test positive for a variant in MLH1 so the doctor and genetic counselor told me to be conscientious about screenings for colon cancer, just in case. There's just no way to be sure about a VUS until they get more data on that particular variant.

  • Annette47
    Annette47 Member Posts: 957
    edited April 2017

    No experience, but wanted to suggest that there is a forum here at BCO for people who have tested positive for genetic mutations. You may get more responses if you post there as this forum is mostly only read by people with DCIS ...

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