In September 2021 is was diagnosed with Leiomyosarcoma in my IVC. Had two surgeries back to back since the first one was diagnosed incorrectly as a common benign tumor. Fortunately, a late pathology report came back positive so two weeks later I was back on the table . I started scans and mri’s every three months and was NED (No evidence of disease) for two years. Then LMS metastasized to my lungs..starting with several tumors in the lungs and on the IVC. Was told surgery (not available now) and radiation were the best option. A year later more tumors grew in the lungs so another round of radiation. I started seeing a pulmonologist because of radiation fibrosis.
I continued with scans and was NED for another year and a half before it metastasized to my bones specifically the spine.
I start radiation to my spine tomorrow.

LMS can be very fast and sometimes it’s a little slower. It also is very tricky and not consistent from person to person for the most part. I go to a support group and there’s another person with LMS who has had a similar trajectory the goal of the doctors is containment and a good quality of life.
I’ve had very little pain or symptoms over the last four years and quality of life is my focus. Staying positive and dealing with all the anxiety is now my life’s work. Find support..it really helps.