Uterine leiomyosarcoma with lung metastasis: Treatment options?

Hello Colleen...
Thanks for you're thoughtful words of encouragement. We're living each day in positivity and appreciating the good that we're blessed with. Right now, we're hopeful for good outcomes, as we have been these last 2 years. Fortunately, my Wife is feeling fine in spite of the rollercoaster we're on.

I have a family member who is facing same /similar

?s for you: are you using a surveillance schedule of a CT scan every 90 days.
Have you been going to a sarcoma center for treatment? Have you been meeting regular with your oncologist.

I also have LMS. My hysterectomy had been 20 years ago. I also had lots of fibroids prior to hysterectomy. I wonder if my LMS is from a parasitic fibroid that escaped the hysterectomy. My first scan was all clear... Next one is in March.

She was diagnosed on Christmas Eve 2024 and has never left the hospital.

They gave her 3 different blood thinners and say she's still clotting and surgery is not an option.

I' m so sorry . i was replying to Western Canuck who had a hysterectomy in March 2024.

What surgery did your wife have?

The oncologist at Barnes Jewish Hospital with a clinic that specializes in treating sarcoma cancer prescribed cabozantinib/Cabotyx to combat the sarcoma cancer that spread to my lung. Since I just started taking the medication in pill form, it maybe too soon to tell how effective it is. However, it is very expensive ($20,000.00 for 30 day supply) without insurance to cover at least most of the cost. There maybe alternative methods to acquire the medication at reduced cost.

Hysterectomy Nov. ‘25. Hopefully, removed without spreading.
Three spots in chest. Followup in March’26 with CAT Scan.
Anyone with similar situation? Any prognosis?

@katie80ncr67
Hello....as you've probably been told, clear margins are the best result. Hopefully, that was achieved. My Wife was diagnosed with rLMS in 2023. Following surgery, she was N.E.D, except for small lung growths that were closely monitored with quarterly CT scans. Lung mets were confirmed with bronchoscopy in Jan 25. She has been on oral medication since then with good result. Consistent monitoring as well as care from a sarcoma specialist is very important. Various treatments for your sarcoma type are available. Learn as much as possible about your sarcoma. Take your time in decision making. Make sure you have an experienced care team helping you. Best wishes to you in your cancer journey...❤️

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.