Thanks Karen and Pan for your replies. My name is Sarah by the way, I’m about to turn 35 and have had no cancers so far.
It does seem crazy that my mum was not diagnosed earlier, we even had a couple of her consultants advise her not to get genetic testing!! In the end I got the ball rolling by arranging to see a geneticist myself and she said my mum needed to be tested first so they knew what to look for in me. Its such a revelation to find out about LFS and shocking how rare it is.
I’m going to contact that geneticist I saw at Great Ormond St and get the test sorted asap. I read that it takes 8 weeks to do the test, is that right? :unsure:
Thanks, Sarah
