Hello Barneyboo22

I'm sorry to hear that you've recently been diagnosed with a rare form of cancer. It's understandable that this may be a difficult time and natural that you want to try and connect with others who may have experience with the same diagnosis. 

I've looked through the forum and unfortunately, I can't see that we've had any other members post about this particular diagnosis. It can be difficult when you have a rare cancer to find others who have experience of the same but hopefully you will be able to make that connection. 

In the meantime, if you think it may help to talk with one of our nurses about your situation you're welcome to call them on 0808 800 4040, Monday to Friday 9am to 5pm. I know they will be happy to listen and offer any advice, information and support they can. 

I do hope that you have some positive news soon Barneyboo22. Keep in touch here and let us know how you're doing. 

Best wishes, 
Jenn
Cancer Chat moderator