Lynch Syndrome & Colon Cancer

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

Also I just wanted to let you no, that when I had: cancer when I was 38 they did a complete proctocollectomy that is removal of my entire large intestine and my rectum and they also did a hysterectomy at that time because of the Lynch syndrome. They told me I'd have cancer in my uterus by the time I was 50 if I didn't do that. I didn't have to have chemo that time either. I literally dodged a bullet. They told me that if I would have waited 6 more months the outcome would not have been the same. When they did the biopsy on my colon. I had cancer all over. Places they didn't see on the colonoscopy. Because there are so many folds in your: you can't visually see everywhere. So someone that's really high risk like I was. They just wanted to remove everything and I'm so grateful they did because there was a couple places that it was almost through the: wall and they didn't see those places.. My mom already had lost my brother at that time at 32 from: cancer and I can't imagine if I would have also died at that young age because I was 18 months younger than he was.

Anyway, I just wanted to clarify that because I had small bowel cancer the last couple years twice. But prior to that I did a: cancer but I had my entire: removed not just some inches or feet. It was the whole thing.

Like I said in my other message, you can ask me anything, I'll do my best to answer. I hope everything's going good for you!

Thank you, most people are suggesting that I have a Genetic Oncologist. I live on a small island, and have access to Charleston and Savannah. So will see if a facility has that kind of specialist on staff. See my oncologist that handled by breast cancer in 2022 tomorrow. To discuss treatment plans..,...thinking of just doing a wait and see. Having a colonoscopy in a few week, to check for polyps. Finally healed by having Diareha occasionally. Thank you for sharing your story....sending a huge hug.

no nothing yet, newly diagnosed