Testing for Lynch syndrome

Hi  and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear that you have lost both your mum and her sister to cancer, life at times can be so unfair. I do appreciate the concerns you are having about your own health.

As we are not medical professionals but cancer patients we can’t answer these types of questions but I would always recommend you talk with your GP. 

We do have our ‘Ask an Expert’ section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

All the best in your research,

I Hi

you are quite right to flag up the connection between bowel and womb cancer in a family as this can indeed signify Lynch syndrome. If I was in your shoes, I’d ask the same question.  

I am not a genetics expert but I have been through genetic testing for a brca mutation. As I understand it, testing would  need to start with your aunt. If she proved positive then testing would be extended to you and other relatives. If you were positive for the mutation then you’d be offered a surveillance programme that aims to pick up any cancer early when it’s more likely to be curable. 

It sounds from your post that you know what you’re about but if you do want to know more, check out the information on the information and support section of the Macmillan website. 

So those are the facts - what do you do with them? Are you able to talk  to your aunt about your concerns? That would seem to me to be the starting point. If she is open to listening to you, she should talk to her oncologist about genetic testing. 

Having said all that, age plays a huge part in cancer and one of the patterns doctors look for in assessing whether there’s a risk of a family carrying a mutation is developing cancer at a young age. That means before the age of 50.

If you want to talk this through with someone who really knows their stuff, then do call the Ask Eve nurse information line 

https://eveappeal.org.uk/supporting-you/ask-eve/

I wish you all the best 

This is a link to the Online Information and Support Section  that my friend is highlighting. A good place to find information covering cancer diagnosis, treatments and pages covering most types of cancers.

((hugs))

Thanks Mike for your reply

Thanks Daloni.

I will be seeing family in a couple of weeks so will discuss.

Hi 

You are welcome and I think that’s a good plan.  Maybe take some information for them to read? It can take a while for something like this to filter through. Our brains can resist unwelcome information. 

Are you aware of the NICE guidance saying everyone sign colon cancer should be tested for Lynch syndrome? 

https://www.bowelcanceruk.org.uk/news-and-blogs/news/urgent-improvements-needed-to-diagnose-and-manage-people-with-serious-genetic-condition/

There’s some good stuff here about screening women with womb cancer: 

https://eveappeal.org.uk/inherited-risks/lynch-syndrome/lets-talk-lynch/week-two-prevalence/

This might also be useful although it’s a bit medical. It’s a paper from the journal Nature on testing women with gynae cancer for Lynch. 

https://www.nature.com/articles/s41436-019-0489-y

I do hope this isn’t patronising. It’s not meant to be! For all I know, you’re a biochemistry PhD and come from a long line of scientists and I’ve just tried to teach my grandma to sick eggs 

xx