Hi GrandmaJ,

Firstly I hope you are getting on OK and I'm sorry to hear it took so long to get some answers. Hopefully now you've spoken to the doctor you have a better idea of any next steps.

My reply here will boost your post, meaning a few more people should see it and so hopefully you'll get some more replies soon.

You can also search the forum - using the bar at the top of the page - for other relevant discussions on here, if you would like to. It looks like there are a few other similar discussions.

We're always here for support on the forum if you need it.

Wishing you all the best,

Ben
Cancer Chat Moderator

Thank you Ben for your reply.... 

I feel a bit shell shocked, and that although I still don't have any accurate histology, I'm still told that my life is now limited.  Can't really take it in, and not sure what to do or think.  I realise that it's a rare cancer and there will be few that have had any experience of it.  Just not sure where to go from here.

I have been reassured that I will get treatment next month, but that it won't save my life... I'm so gutted!

I'm sorry to hear about your diagnosis. My husband has just had the same news, which is very shocking. We live in a city, London, and have had very fast referrals. No cure, but treatment offered. We'll find out more tomorrow.  Just four weeks from seeing the GP to meeting with oncologist to plan treatment. However, in those few short weeks T has been at A&E twice due to a) severe pain, and b) a bad reaction to heparin for heart arrhythmia (discovered on first visit to A&E), resulting in three nights in hospital. So that has speeded things up for us.  Best of luck in getting treatment. Be very clear what you want, and be very persistent to get it.  Keep on asking When? What? What benefits and what possible risks?