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Lynch Syndrome & Colon Cancer

Colorectal Cancer | Last Active: Feb 3 10:26am | Replies (27)

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@lindyruss

Did you do any chemo after your small bowel cancer?

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Replies to "Did you do any chemo after your small bowel cancer?"

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

no nothing yet, newly diagnosed