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Hi
I would be very interested in any information or experience about Retroperitoneal leiomysarcoma I live in the UK, and was diagnosed last April when being scanned for PMP....which I also have. I have had the Sarcoma removed when I had my big surgery for the Appendix cancer, hopefully with clear margins, and am now classed as Disease Stable for both cancers. It is so scary having so little information, and I would be grateful to hear how others have progressed with this disease.

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Replies to "Hi I would be very interested in any information or experience about Retroperitoneal leiomysarcoma I live..."

Hello....my Wife was diagnosed in Feb 23 and had been NED for nearly 2 years. Early scans showed a few very small lung nodules, which were too small to biopsy. Over time, in late '24 and early '25, a nodule was large enough to test. It was positive for sarcoma...thus the rLMS had metastasized. We opted to put off any drastic chemo and chose a biologic drug Votrient, which has very manageable side effects. Scans continue every 90 days and we hope for "stable disease" or improvement which has shown in recent scans. We hope that continues but understand this cancer isnt predictable. Wishing you well with your diagnosis and treatment! ❤️ Use any and all sources to educate yourself on rLMS and treatment options. Find a sarcoma specialist or sarcoma center near you. Blessings to you on your journey with this illness!!