Hello. Wanted to post here as have searched for posts relating to this and not found any. 

I know its a very rare cancer but also know I'm not alone. 

Gene Change has been found in my family. Many still doing gene testing, some have already been Dx with tumours. So far nearly 15 of us affected and of course our loved ones are also affected. 

It's felt like a bomb has gone off in our family and extended family. Currently my own parents are looking at the possibility of all three of their children having cancer. How do you even begin to process that??

I'm shouting our here as my own family network are all fighting their own battles. And if there is anyone who knows what this is like and wants to chat reach out to me. I need support too. Life has changed forever for all of us. But we are all still at the  'I'm fine' stage. Only I'm not! hoping to get results of MRI soon Been told 75%chance they'll find something. Hoping for the best