Anyone diagnosed with spindle cell sarcoma in the breast?

Posted by kburl505 @kburl505, Jun 13 8:58am

I recently underwent a unilateral mastectomy for a rapidly growing tumor in my left breast. It was originally thought to be a phyllodes tumor but after the pathology came back is was labeled a high grade spindle cell sarcoma. They still can’t figure out the subtype and I am set to meet with oncology soon and have a CT of my chest, abdomen and pelvis. The hope is that it hasn’t metastasized anywhere. Obviously I am terrified and worried and just looking for a connection. Has anyone else had a sarcoma of the breast?

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sophie100 | @sophie100 | 5 days ago

So sorry @kburl505. I know how nerve wracking this feels. My son has synovial sarcoma- so not quite the same but very aggressive. Recommend finding a sarcoma specialist- and if you can, get a consult at MSK. Sarcoma docs are a fairly small and tight knit group. What we were told (and so far seems true), is that sometimes these aggressive cancers can respond incredibly well to chemo. Doctor's knowledge/familiarity is key.