Hi everyone!
I had a 3.5 cm tumor removed from my right leg, the pathologist reviewed 6 representative slides and diagnosed me with low-grade Myxoid Liposarcoma, no round cells were observed.
It is April and the tumor was removed in March, and I am currently going through scans. MRI of my leg came back clean, but I am still waiting to get a CT scan.
However, over the last 6 months this is what I’ve been experiencing:
Key Symptoms (Systemic)
● Unintentional weight loss: ~60 lbs total (initially intentional ~30 lbs over 8 months, then followed by continued loss despite increased caloric intake and reduced activity).
● Severe fatigue: debilitating since January; worsens after exertion (post-exertional exhaustion lasting days)
● Drenching night sweats: persistent (partially improved ~30% after tumor removal)
● Chronic lower back/pelvic pain: deep, constant, up to 8/10 severity (partially controlled with 2400 mg ibuprofen daily, brings down to 3/10 pain)
● Palpable mass: ~2 cm lump in left groin, noted increasing size over ~2 months
I went from being very active (working out 1.5-2 hrs 5x per week) to being couch/bed bound by these symptoms. I had to step down from my promotion at work and walking around my neighborhood feels like climbing a mountain.
My friend also had these symptoms and a similar experience, however she had Non-Hodgkins Lymphoma, not Liposarcoma.
Has anyone else with a similar diagnosis experienced the same? Any advice on questions to ask my care team or tests to advocate for?
All perspectives are appreciated!