Lynch Syndrome

[Worrier100]

Hi,

Found out recently my DFs stomach cancer is caused by Lynch Syndrome. He tested positive for all 4 gene mutations.

I am now spiralling knowing there’s a 50% chance I will have inherited and therefore possibly my poor children.

I am terrified. Will pray to whichever god I’m negative but in the meantime, any positive stories about those of you who may have tested positive too?

My dad is late 60s and his first cancer so it’s relatively late in life for this syndrome. His siblings have had no issues but his mother died young from cancer and his father in his 70s I believe.

Any kind words gratefully recieved 🙏

Hi Worrier,
i’m sorry to hear about your dad’s illness.

I tested positive for lynch syndrome about 5 years ago - I don’t have all the mutations, just one. I had a preventative hysterectomy, ovaries and cervix removed at 49 and now I have colonoscopies every couple of years and gastroscopies too.

These aren’t very nice procedures but the screening is really reassuring and there is a support group for the recently diagnosed in my hospital trust too. They really do keep an eye on you, so it feels better to know and means they will pick up any issues very early. I also took part in the study of aspirin use in the prevention of bowel cancers in those with a predisposition to certain types of cancer - the results were good in the initial trials

it was a worry to be diagnosed, but like you, my family tended to have their first cancers quite late. My siblings are all clear so it’s only me in my family.