Genetic Testing Question - Lynch & P53

Hi Ms Viva. Something in my biopsies prompted my gynaecologist to suggest testing for Lynch Syndrome. It's quite a big decision to make especially when it could impact on other family members. I was in a similar position to you in that I don't have children but I have a brother who has 2 sons. I did advise my brother that I would be having the test and what the implications might be as I felt I needed to be honest with him. He's very laid back so it didn't unduly bother him! However, I didn't go into a lot of detail..In the event, thankfully,  the test came back negative so there were no repercussions. I suppose it's a balance between being honest with people but accepting that they may react in different ways. Some may appreciate you telling them but others may find it worrying. I live in Sheffield and my results took over 4 months. but I had the test done in October 2022. I chased them up and quite soon after they telephoned me with the results. Good luck with whatever you decide. 

I was tested for Lynch and it was negative. I have no children. I did talk to my cousins about it as they had lost their mum to bowel cancer. One had already decided to get genetic testing due to her mum and the other was convinced by our getting tested to seek it.

It is scary though if Lynch is discovered there is a program for regular screening so that anything can be caught early. 

Thank you so much for your reply and I'm so glad your Lynch test came back negative. You are right about family members and they are all very different. Going to see what happens as not had the test yet but will ask soon. Will need an open mind about possible reactions if test positive but at least have two family members aware of situ and I can get guidance from them too as and when. We've had one Uncle who unfortunately had Bowel Cancer a few years back and he didn't seek medical help early enough and sadly he passed away because of it. 

Thanks again and all the best. X

Thank you Muse, that's really helpful and glad yours too was negative. I just think the more you know the better. My womb cancer was a shock to the system so anything that can help with regular screening etc if required is definitely a good thing in my book. Think it's important to give other family members the info and then they can choose for themselves at the right time for them if they want testing.

Thanks again and best wishes. X

Hi Ms Viva,

I haven't any experience of Lynch syndrome, but have had a similar experience some years ago. My youngest daughter was then in her 20's and had a DVT. She was in hospital for a week while they treated it, and it was suggested that they tested her for a gene that predisposes you to thrombosis. It came back positive, so they suggested my other daughter had the test. She, too is positive. For them it means injections during pregnancy and before long haul flights, and stockings after pregnancy and operations. I like to think of the whole thing as precautionary. I was actually tested before my womb operation and had to do the injections for 6 weeks instead of 4. They actually 'lost' my results, so treated me as if I had the gene!

My opinion is forewarned is forearmed!

Thank you NannyAnny that's very interesting and very helpful too. Sorry to hear about your daughter’s experiences and yours esp the lost test results! I think that saying of 'forewarned is forearmed' is definitely right when dealing with something like this. With my diagnosis I was told after the op that LVSi (lymph-vascular space invasion) was detected which gives a higher risk of cancer reoccurrence unfortunately so I definitely want any possible screening there is available going forward.

Thank you and take care x.

In a similar situation. Sister and daughter may be affected. They both want to know the results. Prefer to have informed choices. 

Good luck with your decision.