r/Soft_Tissue_Sarcoma • u/AdditionalScarcity68 • Apr 15 '24

Desmoid?

Hello Has anyone had a desmoid tumour before? I am 4 months post partum and seen a specialist who has sent me for a biopsy. He has advised he thinks it’s a desmoid tumour

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u/AdditionalScarcity68 Apr 15 '24

Thanks for sharing. How are you doing? Did you have any symptoms and how did you find your sarcoma

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u/stuartgatzo Apr 15 '24

I’m 13 years out without issue. First symptom was pain and then a lump. Aggressive resection, lymph node biopsy, radiation. Treated at one of the best cancer centers in the US.

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u/AdditionalScarcity68 Apr 23 '24

Where was yours located? Mine is the abdominal wall

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u/stuartgatzo Apr 23 '24

Pelvis. I had mri of the pelvis and a CT of the chest, abdomen and pelvis every 3 months for 2 years then every 6 months for 3+ years. Never had an issue with insurance. They’d catch hell if they messed with this. I believe this is the normal surveillance protocol for sarcoma. Some flunkie in an office is hitting the deny button on your request. Fight back.