extra skeletal myxoid chondrosarcoma

Hi Mallogs 

Sorry there have been no takers yet, one of the issues with sarcoma is of course that it is a rare form of cancer - my wife's is Leiomyosarcoma so different to this.

I wonder if you had found the sarcoma uk website as they may have some more contacts in this area.

<<hugs>>

Steve

I was diagnosed just over a year ago

Hi there, I have just been diagnosed with extraskeletal myxoid chondrosarcoma and it seems to be pretty rare so would be nice to follow this thread and learn of everyone's journey and progress. 

Hi - you and I both!

Happy to share with you

I see you originally posted quite a few months ago. I was only diagnosed a few days ago but waited 2months for biopsy result so although I'm new to all this it also feels like a lifetime already. I have an mri tomorrow to see if it has grown or how it has behaved since July when I had my initial scan. It struck a chord with me that you have a physical job, because I do too. I'm self employed and have my own cleaning business so all my clients now know I'm off but I don't know if I'll be able to return as it depends on my treatment and recovery. 

For me I was feeling under the weather so had a blood test and was admitted to hospital with Hypercalcaemia. 12 days later the biopsy result confirmed I had EMC. There then followed a plan for 25 days of radiotherapy and then I had my op last September 

Thankyou for sharing. Can I ask how you are now? I'm not feeling very hopeful to ever go back to my current job after the op but I will most definitely be putting myself first. 

Hi - the operation caused considerable damage to my leg and abdomen which had resulted in me not being able to walk very far. In addition the sarcoma metastised to my lungs which is now the focus of regular scans. Where are you being treated ?

Oh I'm sorry to read this, I hope your getting the treatment you need and quickly too. I am under the Swansea, Wales nurses but have had appointments in Newport, Nevillle Hall and Ystrad Mynach so far and all have been amazing so far. I'm a bit concerned as Iv had this for a few years before the GPS finally agreed to start doing tests so I'm hoping when I get all my results that the damage of having to wait hasn't made any more damage. Feeling positive though-can't change the past now. 

I have a sister who lives near Swansea! I am under the care of Oxford

Howdid you know you have had it for several years?