Lynch syndrome

FormerMember over 3 years ago

2 replies
178 subscribers
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Hi guys,

Ive had a lot of my bowel removed due to spotting of bowel cancer and emergency operation. The post operation histology was really positive with no lymph nodes affected and apparently the cancer was caught at the final stage before it spread from the bowel. As everything happened so quickly (4 hours in between telling me I had cancer to being put under for the op) - I’d sort of rationalised everything thing as I HAD cancer before but no longer HAVE it.

Being quite young for this (40 years old) - I was offered a genetic test for lynch syndrome. I found out two days ago that I’m positive for this and have a genetic marker and this has really twisted my head around, have I passed this onto my two kids (both female), is this just the start? Am I going to be affected again by this?

I honestly don’t know enough about what lynch syndrome is, what happens next, what tests need to be done etc

I thought after the positive histology that this was behind me but now feel I’m being dragged back again and I may never be right

Hayleyc89 over 3 years ago

Hi. My husband was diagnosed with bowel cancer Oct 2020 histology showed he also has lynch syndrome we have been told our children will have to be tested later in life we haven't been given a great deal of information about lynch syndrome either. Take care.

court over 3 years ago

Welcome to the forum ! There used to be a great member on here who has been very involved with driving awareness of lynch syndrome forward .
https://www.macmillan.org.uk/cancer-information-and-support/worried-about-cancer/causes-and-risk-factors/lynch-syndrome-ls

This is the Macmillan leaflet . Not sure if you have stumbled upon it but towards the end it goes into the preventive ways to address it but also the robust screening that starts from the age of 25 ! Getting fulling informed and knowing how to put safeguards in place is also important in managing the genetic aspects ! They should have regular colonoscopes if they have inherited it but it is very important to say that they might not have !

The other breakthrough is Immunotherapy treatment is proving a game changer for some lynch syndrome patients . That’s an additional insurance policy of sorts .
But I would thoroughly recommend you get in touch with the lynch syndrome association for the U.K. who I think you will find a very reassuring experience.
A difficult time at the moment but hopefully you will get some hope and guidance on how to move forward with it .

Take care ,

Court

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