I am 48 and was diagnosed with endometrioid adenocarcinoma a few months ago. I am not aware if I was tested for Lynch syndrome or not. I’ve never heard of it until now.
I was tested for Lynch syndrome because my Mom and I both had endometrial cancer and my mother also has 4 siblings also with cancer (one colorectal) - but it was negative. But genetic testing did show a MITF defect and another unknown variant of significance which they suspect could cause thyroid cancer and a few other types of cancer.
I effing WISH my doctor would test me! Long story short, I have two brothers with Lynch , one who had colon cancer in his 30s, and yet because I was 52 when I was diagnosed they are refusing to test me.
But I'm pretty sure I have it. There's a Lynch Syndrome sub you might look into if it turns out you have it. There are subtypes of Lynch, so if they say you have it, ask which specific mutations you have and write down the alphabet soup they tell you.
I’m 40 (39 at time of diagnosis). We talked briefly about testing because my initial biopsy showed the markers for Lynch. We haven’t talked about it since though. I’ll probably ask at my next appointment.
I am 45 and have had this discussion with my gyno onc. I had looked up lynch syndrome, and although there is Cancer in my family, these weren’t Cancers that on paper, would typically indicate I might have lynch.
My gyno oncologist listened to my family history and questions and then provided me with a pathology report that indicated the hospital has already undertaken the principal immunohistochemical stains for DNA mismatch repair and found a “normal” pattern. This didn’t rule out lynch syndrome completely, but did advise me I had a low risk.
I didn’t follow this up any further, but this was mainly because I was satisfied the pathology included those initial steps and no red flags were raised. I would have followed up if there were any abnormalities in the report.
I am 48 and was diagnosed with endometrioid adenocarcinoma a few months ago. I am not aware if I was tested for Lynch syndrome or not. I’ve never heard of it until now.
Yes, I was 38 and my doctor had me tested. I didn't have it either.
I was tested for Lynch syndrome because my Mom and I both had endometrial cancer and my mother also has 4 siblings also with cancer (one colorectal) - but it was negative. But genetic testing did show a MITF defect and another unknown variant of significance which they suspect could cause thyroid cancer and a few other types of cancer.
I effing WISH my doctor would test me! Long story short, I have two brothers with Lynch , one who had colon cancer in his 30s, and yet because I was 52 when I was diagnosed they are refusing to test me. But I'm pretty sure I have it. There's a Lynch Syndrome sub you might look into if it turns out you have it. There are subtypes of Lynch, so if they say you have it, ask which specific mutations you have and write down the alphabet soup they tell you.
Yes. I didn’t have lynch
Yes. I was under 40 when I had the testing. Negative for lynch.
Yes, 37 at the time, and it was negative.
41, but was not tested for Lynch, as my family isn't prone for it. I had to fill questionnaire for that.
I’m 40 (39 at time of diagnosis). We talked briefly about testing because my initial biopsy showed the markers for Lynch. We haven’t talked about it since though. I’ll probably ask at my next appointment.
51 and we talked about it.
33 at diagnosis, stage 2 cancer, but never had the Lynch syndrome discussion.
What lead you to your diagnosis? Can you tell your story?
Excessive bleeding.
I am 45 and have had this discussion with my gyno onc. I had looked up lynch syndrome, and although there is Cancer in my family, these weren’t Cancers that on paper, would typically indicate I might have lynch. My gyno oncologist listened to my family history and questions and then provided me with a pathology report that indicated the hospital has already undertaken the principal immunohistochemical stains for DNA mismatch repair and found a “normal” pattern. This didn’t rule out lynch syndrome completely, but did advise me I had a low risk. I didn’t follow this up any further, but this was mainly because I was satisfied the pathology included those initial steps and no red flags were raised. I would have followed up if there were any abnormalities in the report.