MSH6 diagnosis

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Hi, am new to this group chat as I have been a member of the endometrial cancer group.

It was suspected early on in my diagnosis that I could have Lynch syndrome, as both my mother and grandmother have had this disease at my age. I ventured into the testing after my treatment had finished with the cancer.

I got the news yesterday. It is worrying for my family, so it is now being more aware of any changes and getting the tests offered them in the future.

I am now having to go through more treatment as my cancer is progressive. 

So I am a MSH6 lynch syndrome..

Anyone else with a story to tell?

  • Hi

    I'm sorry to read that it's been confirmed that you have this syndrome and I can imagine how worrying it must be for your wider family too.

    I don't have any experiences to share with you but I noticed that your post hadn't had any replies. Looking at the previous messages in this group it looks like this thread is the most recent one. Although it's two years old the posters might still be on this community so you could respond to the post to connect with them if you wanted to.

    Wishing you all the best

    x

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  • Hi Shellie, How are you doing? I just got diagnosed with MSH6 yesterday. I had endometrial cancer six months ago. Have you family been tested yet? 

  • Hello! I have paperwork for my boys for when they are ready to take the test but they have chosen not to yet. I keep mentioning it to them. I keep hoping they will.

    My sister went for her test and thankfully it came back negative, so it just landed in my net so to speak!

    Do you have family? Is it worrying you?

    Are you currently going through treatment?

  • Hello Shellie, great that your sister tested negative. I have yet to tell mine. I have a daughter, who was in on the first genetic counseling appt before I took the test. I'm OK about it, but she's pretty worried, as she was told at the appt she would need a hysterectomy by the age of forty. She's 35, no children, so it's a big deal for her. I didn't need any treatment after my hysterectomy. I hope you are ok.