Lynch Syndrome & Colon Cancer

Thank you, my wife and I are getting tested to see if we were carriers. We will definitely make sure he follows up with any gastro issues!

Thanks again

Sorry for the typos

Definitely follow doctor recommendations about follow-up colonoscopies. Don’t skip them. Also, take any symptoms in the digestive tract right to a gastroenterologist that know about Lynch syndrome. It has also popped up in the small intestine and stomach of my husband’s family members (and also uterus, bit that applies to female family members, of course). Lynch Syndrome can make cancers grow faster. My husband’s mother has lived to a nice old age with Lynch Syndrome, you just have to keep up on it.

Thank you so much, I will pass that along to him. And praying for both of you for cancer free lives!

I am sorry your son has had to go through this at such a young age. I too had colon cancer in 2007 and I suggest that your son avoids eating red meat and processed food. There is evidence to avoid these foods and my cancer has not returned, hopefully it won't.

My son was recently diagnosed with colon cancer, after some testing we found out he has Lynch Syndrome. One doctor wanted to remove his whole colon, but on a second opinion this doctor just wanted to remove only about 12” off the right side. So of course he went with the second opinion and had it removed in September. She got enough for clear margins along with about 12 lymph nodes (none cancerous), after the pathology report we found out it was stage 2 and had only made it to the 3rd lining of the colon! Yeah!! No kemo or radiation is necessary! We are very blessed and God is good! So I guess my question is if anyone has run into this situation in the group? My son is only 26 and has a long life in front of him and if anyone has any suggestions especially from people that have dealt with this would be most helpful. Thanks,John

I was diagnosed with Lynch syndrome after my brother died at 32 of colon cancer, and then they found out I had colon cancer. We had a mutation in our mh-6 gene that they had never seen in any other family at that time, and did extensive genetic testing on my mother's side, mostly everyone has that mutation on my mom's side. I have had a complete proctocolectomey because of colon cancer at 38, and they did I complete hysterectomy at the same time because they said I would have uterine cancer by the time I was 50 if they didn't, and now I have small bowel cancer at 52, and just recently diagnosed with MAC. The main thing with Lynch syndrome is that you need to be watched extremely carefully! I can't stress that enough. I have always taken precautions, and done all the testing, had EDG and sigmoidoscopy done at regular intervals, once a year on the sig, and every 3 years with the EDG, and I wish that they were doing the EDG every year because they would have caught this cancer far earlier!! I have surgery tomorrow morning, Thursday morning. I think I'm just going to pull an all nighter because I have to be there at 5:30 in the morning! Lynch is rare, but there is people with it, and some people will get maybe a Cancer and then there's others like me, that get more than one. Like I said before being proactive and being watched like a hawk is going to pay dividends when it comes to your health and happiness and well-being!! Genetic testing has come so far since they did the first genetic test on myself 14 years ago. They first thought that our family had a mutation in 2 genes, but it turned out to be only one, and that was only recently discovered. It is amazing how far they've come with genetic tests!!!
If you have any questions I'd be happy to answer them.

Angela

Thank you !

@candacesusan1958, welcome. I hope you saw the helpful posts from @phyllmikey and @bea1972.

You may also be interested in these related discussions:
- Tested postive for Lynch Syndrome: Anyone have this? https://connect.mayoclinic.org/discussion/lynch-syndrome-27c1fe/
- Dealing with Lynch Syndrome and Constant Screenings https://connect.mayoclinic.org/discussion/dealing-with-lynch-syndrome-and-constant-screenings/
- Symptoms and Causes of Lynch Syndrome: Looking for info https://connect.mayoclinic.org/discussion/symptoms-and-causes-of-lynch-syndrome/

Candace, I'm sorry to hear that you are feeling sick, alone and isolated. I'm glad you found this support group. Has your colonoscopy been rescheduled? How are you doing today?

Yes I have; scheduled for genetic counseling in two months (they are so busy); basically my understanding is that there is a higher percentage of developing other cancers; not a absolute. Screening becomes an important piece of your health care - and your children.