I had low grade myxoid LMS too. It changed to ESS in 2000. It spread to my lungs and back to the retroperitoneal area. Do you know that www.acor.org has an online support group for LMS? Join and learn the treatments for LMS. I know it is important to go to a sarcoma center.
Keep hope alive. You need not be alone in your leiomyosarcoma journey.
The list has many people on it from all over the world. They will give you good advice. I urge you to join it.
If you want to know my story, it is posted online on the www.LMSDR.com
story pages.
Rosalie