Lynch Syndrome & Colon Cancer

Has anyone else been diagnosed with having the Lynch Syndrome Gene?

Hi,
I have Lynch Syndrome as well. I did not know about this gene when I first learned I had an inoperable brain stem tumor in my early 30's (I'm 51 now). Learned this while I lived in NY. Years of treatment and radiation - I am stable in the brain. But necrosis from radiation caused seizures. However, finally, they are managed by medication (took many tries to get this). I first learned I had colon cancer on 12/10/2016 when got violently ill at the Brookfield Zoo Christmas lights in the monkey/rainforest house. My ex-bf dropped me off at the ER later and that is when I learned. I've had many many surgeries since then and doing great. I am currently on Avastin and Keytruda and have my hair, energy, and I work full-time and am an avid hiker (like real peak hiking, not walking). I learned 3 yrs ago about my hereditary gene after my super healthy dad suddenly died of COVID-19. I wish I knew earlier so that I could have avoided some life mistakes and led the life I am now. I love nature and took my two beloved little dogs and myself to San Diego county this winter and plan to return to Chicagoland soon and sell my place and relocate where I can live, and not just exist. (still considering other areas with lots of nature, great cancer care and no harsh winters since I have awful neurapthy and no crazy heat/humidity since can't breathe well in that). I know all of this is scary - but please just eat well, get out and be active, laugh a lot, stay away from pain killers (unless absolutely necessary), and enjoy life. Half the battle is attitude.

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.

@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/?commentsorder=newest#chv4-comment-stream-header
- 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?

Thank you !

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

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 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.

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

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.