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Does anyone have both MUTYH colon cancer gene mutations (MAP)?
Colorectal Cancer | Last Active: Mar 17 11:50am | Replies (5)Comment receiving replies
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.
Replies to "Hi Bevjoy, My brother and I both have double mutations on the MUTYH gene. I'm 45..."
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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.