Husband 76 had colonectomy for stage 3 bowel cancer April 2023. He had an unexpected letter recently telling him that he has Lynch syndrome. There was no further information so we have researched it ouselves. Now wondering where we go from here given that we have 2 sons, both now in their 50s. I feel that we need counselling in order to handle the situation appropriately.
I think there is also a social media group for Lynch Syndrome sufferers? If you’d like to give the support desk a ring on the number below then I’m sure they’d be able to have a chat with you and advise about counselling.
I have Lynch syndrome, inherited from my mother who unfortunately passed from BC quite young. Your sons should get referred by their GP for genetic testing as they will need 2 yearly colonoscopies if they also have it.
If they do, they will go under the bowel cancer screening programme for their scans to ensure they are done on time.
As Karen says there are 2 very good Facebook pages for Lynch syndrome which are great for support and advice.
Feel free to message if you want any more information.
I lost my husband to BC in 2001. I have 2 sons in their 30's. My eldest has regular screening but my youngest has chosen to ignore it. We have now been referred for genetic testing for Lynch syndrome. All very overwhelming but we need to know where we stand as there are 4 grandchildren to consider.
I am so sorry about what has happened to you and your family and at such a young age. My heart goes out to you all.
We have been given very little information so far and need to talk to the experts before we find out about what to do next and if and when we need to tell our sons and about the possible implications for them and their children.
Thank you for sharing your experience and I wish you all the very best for your futures.I
