Possibly Muir Torre

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Hello, I am new to this forum so forgive me if I am writing this in the wrong subsection.

I am 23 years old and my mother passed from stomach cancer 2 years ago. At the same time, I found out my maternal uncle had bowel cancer around 15 years ago but survived. He recently got told he probably has Muir torre type lynch syndrome. My maternal grandmother died from stomach cancer and my other maternal uncle died from an unknown gastrointestinal disease. 

My issue is my uncle who probably has MT is very mentally ill and refuses to get tested for it. Everyone else in the family doesn’t want to know if we have it however I am desperate as I have disabled siblings who I won’t be able to treat well if they do develop cancer as they cannot voice their pains. These cancers are usually detected too late anyways and with a disability it makes it almost impossible to fight. The NHS will not let me get tested before my uncle and I am so concerned as I have a huge family and the odds of surviving MT are not high. 

Sorry for the lengthy paragraph, I just don’t know what to do.

  • Hi  

    welcome to the forum and I can totally understand your concern given it could potentially directly impact you .

    Have you been in touch with the lynch association ? 
    They have a strong advocacy team and up to date information. One of our previous forum users is heavily involved in it .

    We also have a helpline who might be able to assist you get some guidance. 0808 808 0000

    You are right to peruse this .

    Take care ,

    Court 

    Helpline Number 0808 808 0000