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.

Hi bevjoy and others. I also have MAP as did all 3 of my siblings, really rare that all 4 of us got it. At age 44 my brother got colon cancer and was thought to have FAP (lived to age 76 and died of unrelated issue). My sisters and I got preventive subtotal colectomy surgery about 30 years ago. We were just left with some sigmoid colon and rectum. And we all got yearly scopes and upper endoscopies every 2 years with a few polyps found each year. Also a pill cam every few years. And genetic testing revealed MAP. One of my sisters died about 10 years ago of cancer of unknown origin, and ironically her colon was not affected. Currently I am 69 and after 32 years of no cancer, this year I got colon cancer in my sigmoid colon, and 2 weeks ago got a colectomy with retaining my rectum. I will still need to be scoped for life.
I learned along this journey that MAP can lead to higher risk of thyroid cancer among others. I get a thyroid ultrasound every year. And my son was tested as a teen and he was found to be a carrier (has 1 mutation). I have an appt. w/genetic counselor down the road to get all the latest updates on MAP and carriers.
Best to everyone on this journey!

Hi! I keep to an annual schedule for all high risk areas, as well. My biggest issue is my diet. I get along very well with some foods until I don't!! It's a guessing game with some foods, but others are a clear I can't eat that! Gone are the salad days. Anything leafy is problematic. I'm so grateful that I'm relatively healthy at 68. My last lower scope did reveal a "blind loop" at the illiium/rectum connection. From what I understand, it is a spot that can collect stool and may cause some stagnation by pooling the waste. Was given antibiotics just in case of infection. This finding helped make sense of some of my changing symptoms such as feeling gassy and abdominal discomfort. Also, if I have diaherra, it's bile type due to no gallbladder either. I worry about bile related anal cancer, so I try to keep to a diet that bulks up my stool, (bran cereal) amongst other foods that balance me. I do have a lot of irritation in that area, no matter what I do. I tried Metamucil but it caused more stress to my system. I avoid as much as possible getting constipated because I have a lot of abdominal scar tissue from previous surgeries and it hurts when bloated, etc. Sorry about too much info!! I'm just so happy to be living a full life and that I had docs who took all of my GI symptoms seriously over the years. Thankfully, my son only has one mutyh gene. I'm hoping that MAP becomes more well known, especially with more younger people getting colon cancer. Genetics matter! 🙂 I'd be happy to compare notes!

@bethbeep, helpful post. Thank you.
Having had the second colectomy, do you have an ostomy?

@bevjoy
Hi, I also am gradually finding out what foods I can tolerate and what to avoid. So far any fruit juice or dairy (ice cream) don't agree, as they quickly go right through me. I drink soy milk and that is fine. I haven't had salad since my surgery (nervous to try). It seem that more solid cooked foods definitely have better results. Apples, cheese sticks, yogurt are my go to snacks and rice pudding for a treat. I would like to put on some weight that I lost but so far am maintaining but not gaining. And I'm eating more frequently than prior surgery. High protein snacks/meals make me feel better with more energy.
I'm always looking for healthy food ideas that I can tolerate.
Thank you for sharing!

@colleenyoung
Hi,
My recent surgery was a colectomy with an ileo-rectal anastomosis, so I still have my rectum for stool storage and do not have an ostomy.