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

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)?

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. 🙂

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

Hi Bevjoy,
My brother and I both have double mutations on the MUTYH gene. I'm 45 and just had my first colonoscopy, where they removed 44 polyps. My brother is 40 and has had to have 4 procedures in the past year and a total of 56 polyps removed. Apparently it is extremely rare for both siblings to have a double mutation. I would love to connect and hear more about your experience and what doctors have recommended for you. We both have small children and want to do everything we possibly can to stay healthy.

I'm so sorry that you're both MAP. My update: in Aug 2023 I had a total colectomy with ileorectal anatamosis (TA-IRA). It was robotic assisted surgery. All told, I had 157 polyps removed over the years and they found 17 in pathology. The surgery went very well and I was in the hospital for 2 days, walking a mile within 2 weeks. It was scary, but I had no choice. My colon became twisty and they just couldn't reach it all anymore. I've adjusted to having a shorter transition time digestively and there are foods I just can't tolerate. But, I'm doing great, as long as I keep bloating down as they aggravate my scar tissue. I do have an annual sigmoidoscopy (rectum still there for attachment to small intestine) and an upper endoscopy and thyroid ultrasound, breast MRI annually. Also a abdominal/pelvic CT because I have so much missing (had hysterectomy and gallbladder removed in years past). Please let me know if you have questions...Just know that I might not get back immediately because I'm have limited internet right now. But, would love to keep in touch. Also, since MAP is autosomal recessive pattern, each child born has 25% chance of inheriting both mutations. I'm glad that you know about MAP...it is rare and not widely recognized like Lynch Syndrome. Be well and look forward to connecting.