Hello Gaal, 

I am so sorry to hear your daughter has PTEN syndrome and that she was diagnosed at the young age of 31. It is indeed very rare and caused by a change in the PTEN gene as you can read in our page on inherited genes and cancer types . It's so nice of you to be moving to be closer to her. What have the experts told you about her diagnosis and what to expect? 

It's so hard to know what to do and how to cope when faced with a new diagnosis especially with something so rare. I don't remember ever coming across PTEN cases on the forum before but I did a little search for you and found Cathr9999 's thread from 8 months ago which you are welcome to respond to if you wish and this member mentioned being diagnosed as well as her mum with the PTEN hamartoma tumour syndrome. If it would help to talk things through with one of our nurses you're welcome to call them on 0808 800 4040, Monday to Friday 9am to 5pm. 

I will now let other members come and say hello - you are not alone here and I hope that you will be able to connect with others on the forum who have had experience of PTEN syndrome.

Best wishes, 

Lucie, Cancer Chat Moderator