Hello Giorgann

I'm sorry to hear about your daughter's diagnosis. It's always hard to hear that a loved one has cancer and it's undoubtedly a difficult time for you all. 

We've lots of members here who will be able to share their experiences of caring for a loved one who has cancer but I can't see that we've anyone who has experience with this particular diagnosis. Unfortunately, it can be difficult to connect with others when a rare diagnosis is involved. Having said that  I wanted to signpost you to two organisations where you may perhaps find others who have experience with this type of cancer. One is the British Lung Foundation and the other is the Rare Cancer Alliance. 

We also have a team of nurses here at Cancer Research UK and you're most welcome to give them a call to talk things through. I'm sure they will offer any information, advice, and support that they can. If you'd like to speak to them they're available Monday to Friday 9 am to 5 pm on 0808 800 4040. 

I hope this helps and send you both my very best wishes, 
Jenn
Cancer Chat moderator