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Acromegaly Information

Neuroendocrine Tumors (NETs) | Last Active: Sep 29 6:35pm | Replies (9)

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Profile picture for fraaseo @fraaseo

@andee0403 Some of my family & I did genetic testing because our maternal GF died from colon cancer. I tested positive for carrying 1 MUTYH gene mutation which puts me at risk for colon cancer. I have stage 4 colon NETS with Mets & that makes me think it has to be related. My niece had further testing done & was diagnosed with Ehlers-Danlos syndrome. Just seems to be too much of a coincidence.

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Replies to "@andee0403 Some of my family & I did genetic testing because our maternal GF died from..."

@fraaseo where do you even begin to get testing like this? I would have no idea where to start, besides eith the acromegaly AIP mutation...on the 11th chromosome... that's all I know so far...