I’m so sorry that you have this rare sarcoma.  My sarcoma is different to yours but I totally relate to your feelings of being in limbo.  That was my experience in having to go through a series of tests with what felt like very large gaps in between each to get the diagnosis and then had to wait about a month before starting radiotherapy and then 6 weeks after that I had surgery.  Are you being treated at a specialist sarcoma centre?  You should be.  Unfortunately even the common sarcomas are extremely rare but the network the different centres have ought to help and if you are not happy you can always request a second opinion.  I think you will find yourself considered rare and interesting so you will get excellent and prompt attention.   

I do very much hope all goes well for you.   

You poor thing.  I’ve only found someone with my type of sarcoma through this chat.  Even the ‘common’ ones are rare.   

It might help you to know that in removing my tumour (from my shoulder) I was given a skin and muscle graft as they removed most of my deltoid muscle.  That was done as part of my surgery since my consultant had a plastic surgeon on standby as she thought this might be necessary.  I can’t imagine what it must be like further waiting for the reconstructive surgery.  

With mine I have had more discomfort from the graft site than from the tumour removal but in saying that I’m not in any real pain and only taking paracetamol for it.  Hopefully you have been (or soon will be) reassured that they managed to r emove all of the tumour.   I am waiting for the pathology to come back though the consultant is upbeat that she got it all already.  If I can help you with anything please do ask and I’ll try my best.  

Good luck with everything.