Does anyone have both MUTYH colon cancer gene mutations (MAP)?

Posted by bevjoy @bevjoy, Feb 19, 2022

I have autosomal recessive genetic colon cancer gene mutations (biallelic) called MUTYH-Associated Polyposis (MAP). This means that both of my parents were carriers and I inherited both genes (25% chance). Over the last 30 years, I've had 126 colon polyps removed (all types, all locations). I'm interested in connecting with others who has this rare condition. Thanks

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Welcome, @bevjoy. That's a lot of polyps. The amazing thing about genetic testing is that you found out that you have this rare mutation and can closely monitor your colon. How frequently do you have colonoscopies? How did you discover that you had MUTYH-Associated Polyposis (MAP)?

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@colleenyoung

Welcome, @bevjoy. That's a lot of polyps. The amazing thing about genetic testing is that you found out that you have this rare mutation and can closely monitor your colon. How frequently do you have colonoscopies? How did you discover that you had MUTYH-Associated Polyposis (MAP)?

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Hi Colleen,
I was fortunate (ironically) to have digestive issues as a young adult which led to my 1st colonoscopy. For a few years, I was not considered high risk. Interestingly, when I was in my 40s, my gastro at the time began blaming me for the polyps (my interpretation) and another doctor suggested a specific gastro. He looked at my records and said that I have something genetic and wondered why my previous doctor put me on a 3 yr recall and scheduled a colonoscopy. That year, he removed 17 polyps. I thank my lucky stars. We assumed that I had AFAP and I have an annual colonoscopy and an upper every few years. Last year 23&me added the MUTYH gene to their annual membership. (I wasn't aware of this gene, but had upgraded my membership for other reasons.) Once I saw the results, I wanted to confirm with a clinical lab (not direct to consumer) and my PCP ordered the test through Quest Oncology. It confirmed the 23&me result. I'm currently facing some tortuous colon issues/scarring/divuticulosis preventing me from having a completed colonoscopy. I fear that the time is approaching for removal. So, that's where I am today. I found your site as I'm trying to figure out next steps as a virtual colonoscopy isn't really going to solve the problems. I understand that it's very rare to have both variants (MAP). I am so fortunate to have had the surveillance that I had throughout my life and have made it this far (65 yrs old this year) without surgery. Thanks for your question. 🙂

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Yes I have inherited genitcs cancer of the buttocks anus with pulups in the anus. and pevlvis as well the hpv type.

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