Lynch Syndrome. Anyone else?

[LynchSyndrome]

I've just found out I have Lynch Syndrome. I was diagnosed with endometrial cancer last year at a relatively young age, 48. Because of this I have been tested for a genetic mutation, Lynch Syndrome, which has now come back as positive. This puts me at an increased risk of colorectal cancers. Just wondering if anyone else has the same?

My friend discovered it was in her family several years ago. She has so far refused to be tested for the gene, her brother had bowel cancer at a young age.

Yes, I have Lynch Syndrome too, although I'm cancer free so far at 51. Diagnosed with Lynch Syndrome 7 years ago. Although it's quite a shock, it's definitely better to know than to have it and not know. Has your genetic counsellor talked to you about cancer screenings?
There's a uk charity, Lynch Syndrome UK, who are wonderful. Please join their private group on Facebook, there's 2,500 of us there and lots of help, support and great advice. x

Thanks @CarolineJax I have joined that Facebook group. I've not told my DC yet. Both are early 20s.

The genetics team are not sure which side of my family it's come from at the moment. Maternal GM died in her early 60s from endometrial cancer. DM had a hysterectomy in her late 40s but cancer wasn't diagnosed although she maintains that it was. Paternal GM died from rectal cancer but DF died from a completely unrelated condition in his mid-50s so nothing ever reared it's ugly head.

I think I'm glad I know so I can be aware and have the regular screening but it does frighten me a bit. The genetics nurse was quite positive and did remind me that it doesn't mean I will get anything further and screening will hopefully pick anything nasty up at an early stage.

Hello, sorry to hear of your diagnosis. How have you been since then?

I just found out my father has this syndrome and I need to be tested. How did you manage hearing this news? I am really struggling to process it all and very fearful in case I already have a cancer lurking unknown. I am late 30s with young children.

wishing you good health.

Hello @Worrier100

I've been fine. I had my first colonoscopy and endoscopy in May 2022 which was all clear. Next one in May next year. We've also since found out that I've passed the genetic mutation into DD who is 26. She's been given the information about screening and having a preventative hysterectomy once she's completed her family.

I was worried when I found out, especially as I'd already had one cancer. I'm a lot more pragmatic and symptom aware now though. In a way, it's better to know as I get regular screening so anything nasty should be picked up early.

You may not even have inherited the gene. My brother was tested and doesn't have it. Good luck OP.