Hi all -
About two weeks ago, I (30, F) was diagnosed with undifferentiated embryonal sarcoma of the liver.
But this isn’t my first brush with sarcoma. I have been NED from osteosarcoma for 10+ years after being diagnosed as a child around 20 years ago and having recurrence about 5 years later.
In summer 2025 I had a CT of my chest done for a different reason (had been having some asthma like symptoms) which incidentally showed a mass on my liver. Upon further imaging and a biopsy in October, that mass turned out to be a benign cyst. Great - done and sorted.
Then, in February, after getting follow up imaging done on said cyst, two new “suspicious” spots were found on my liver. My surgeon (all of this care was done at a cancer center - MSKCC to be specific - given my past history), as well as the tumor board, agreed this was possibly just post surgical changes and agreed to get another MRI two months later.
Before those two months were up, in early April, I started noticing symptoms of jaundice - including yellowing of my eyes and itching. I had imaging done which noted the lesions spotted in February had grown and were obstructing my bile duct. A biopsy was taken which came back as UESL.
I immediately started treatment - starting a reduced amount of AIM protocol until my bilirubin gets lower and I can get a full dose. I had my blood taken last week and my bilirubin has come down significantly (I also had a biliary drain placed) which was finally some good-ish news, as the idea of only getting a reduced amount of chemotherapy freaked me out. The aim is to shrink the tumors enough to remove them surgically.
Another option on the table is transplant. I’ve already started the process and will be getting a full evaluation done at the end of May. UESL is extremely rare, and even rarer in adults. It’s most often seen in children, and often apparently the first like of treatment is transplant.
Right now, the UESL seems contained to my liver, which is a good thing. I have some optimism and feel grateful to be getting care at MSKCC. But it has undeniably been the worst month of my life and I’m extremely scared about the future.
There’s not a lot online about UESL and I’m trying to be careful about how much I look up - my brain is already doom scrolling so I’m not sure I need more. But if anyone has any experience with this (possibly positive??) I would love to hear it.
(My team is also doing some deep diving on my pathology to see if there’s a genetic reason why I’ve been diagnosed with two sarcomas in my lifetime. My oncologist feels like this is more than likely genetically linked. Not really sure what happens either way).
Thanks so much.