r/sarcoma • u/Abruscini • 13d ago
Desmoid Tumor
34/f and 3 months ago had a c-section, within 24 hours of the operation a large lump appeared on my neck. The OBGYN thought it was from stress because my head was turned to the left the entire c-section dry heaving. At my 6 week appointment it didn’t go away so they sent me to general surgery. General surgery did a CT which lead to a biopsy with “two passes”. The biopsy came back inconclusive even when they sent it out to a bigger hospital. The general surgeon is sending me to a general oncologist who did a fellowship at MSK. The general surgeon told me he thinks I have Desmoid tumor…I can’t see the oncologist until mid September which is kinda driving me nuts. I do plan on asking for a referral to a sarcoma hospital I live on the East Coast so I have a few over here. Just wondering if anyone has dealt with this type of tumor? Or has anyone had their biopsy come back inconclusive? I will say I am annoyed it was inconclusive. When the doctor was doing the biopsy he did mentioned I have abnormal spindle cells and also an abnormal cluster of cells. They were taking the samples and looking at them under the microscope with me laying on the CT table. So I was confused on how they couldn’t get an answer. The doctor even went back in and took more because he said it would have to be sent out for more testing. The soft mass tumor is sitting above my first rib and is sticking out my neck.
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u/Logical_Sugar9118 13d ago
Same!! 24 hours after c section, two biopsies inconclusive to then being a super rare version with a protein gene fusion message me if you’d like