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

I recently had an emergency bowel surgery/tumor is malignant and 12 inches of my colon were removed.
I also tested positive for Lynch Syndrome.
It is scary, and does make you feel so alone. I had a huge pity party and was mad at my body that I have taken care of for 70 years too! Looking for the best treatment and care to handle the future living with this disease.
Please reach out to others, friends, family, church members, anyone you can talk to...it does make a difference to VENT to someone that will listen. Huge hugs.

Did you do any chemo after your small bowel cancer?

Hello @lindyruss and welcome to Connect. I can understand the importance of having a place to vent as well as learning from the experiences of others. You are asking good questions as you approach this new diagnosis.

Here is a link with information from Mayo Clinic's website about Lynch Syndrome,
https://www.mayoclinic.org/diseases-conditions/lynch-syndrome/symptoms-causes/syc-20374714.
Have you been able to get a referral to a doctor who specializes in Lynch Syndrome? If you would like to have a consultation at Mayo Clinic, here is a link that will provide appointment information, http://mayocl.in/1mtmR63.

How are you feeling since your surgery?

I didn't have to have any chemo after my small ball cancer. I am on immunotherapy however right now. Usually when you have Lynch syndrome the chemotherapy won't work as well as immunotherapy. If you have a good doctor, they're going to be on top of doing genetic testing and keeping up with it. And if you find out what your TMBs, that's your tumor mutation burden. That will tell you whether you are going to be a good candidate for immunotherapy or a good candidate for chemotherapy. Usually a score between 10 and 20 is high and a good score for immunotherapy. I scored 56.9 which is in the 99th percentile for how I would respond to immunotherapy.

They only have done the immunotherapy because I had small bowel cancer and they got it all and I didn't you need chemo or anything, but a year later there was another cancer coming back close to where the original cancer was but it was not the same cancer. They know that because of the DNA on the tumor. They've been doing immunotherapy just as a precaution in case there was anything left. Any cells that they couldn't see.

It is a terrible feeling to know you have something like Lynch syndrome. I was only 38 when I found out I had it and I've had cancer three times now. Much time I've been extremely lucky. Knock on wood!!! I see a genetic oncologist and I would suggest that that's who you see too. See someone that specializes in genetics and rare disorders like Lynch syndrome. They will be able to do the most for you and will understand the disease enough that they keep up with the testing you need to have every year to 2 years and it's not just colonoscopies or CT scans. When you have Lynch syndrome you are susceptible to getting different cancers, like uterine cancer, bladder, cancer, brain cancer, stomach cancer, so it can be a little complex.

If you have any questions at all, feel free to send me a message anytime! I hope everything is going good for you?

Angela