Hello LizzieDe

I'm sorry to hear that you've recently been diagnosed with a rare form of sarcoma after having undergone various tests and a surgery in the last 2 years. It's understandable that this may have been overwhelming news to hear and that you've been left with a lot of questions. 

Hopefully, by now you've had some news regarding your referral, but if you've not heard from the specialists yet, then don't be afraid to give your Consultant's secretary a call. They can follow this up if necessary. 

Living with a rare cancer can be difficult, and it can sometimes be hard to connect with someone else who has experience with the same diagnosis. If you've not already done so, then I'd suggest having a look at the Sarcoma UK website as well. 

In the meantime, if it would help to talk things through with one of our team of nurses, then you're welcome to give them a call. I know they will be happy to listen and offer any advice, information and support they can, as well as help you think about questions you might want to ask at your next appointment. If you'd like to chat with them, they're available Monday to Friday, 9am to 5pm on 0808 800 4040. 

Keep in touch, LizzeDe and let us know how you get on; we're here for you. 

Best wishes, 
Jenn
Cancer Chat moderator 

Thank you. I still haven’t heard but have no idea of what sort of timescale to expect. I rang my local hospital on Monday to check and was politely told not to be impatient and wait for them to call me. I only called because the previous specialist told me to phone if I hadn’t heard by Monday. I might give the centre I have been referred to a call.