r/sarcoma • u/Abruscini • 12d 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/sentientdumpsterbaby Spindle Cell 12d ago
Yep, I have a back up plan of the inhibitors. Hopefully they’re never needed, and MDA felt a cursory round of them was overtreatment, so hopefully I was cured from surgery alone. I had the cancer for approximately ten years and my uterus easily trapped it like a fetus so it appears to have been a stupid cancer regardless lol. But I’m taking my experience and sharing it with others to inspire them. I should be dead having a sarcoma for ten years that had aggressive features, but I’m not, and besides for some pelvic issues caused from the tumor pressure, I’m relatively normal now. Just gotta deal with the demon if scanxiety every now and then. But I’m interested to know what your diagnosis ends up being. Feel free to message me at any time if you just need someone to talk to. Being a young woman with sarcoma blows but it’s easier with a community who can relate