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Anyone diagnosed with spindle cell sarcoma in the breast?
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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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.
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1 Reaction@kburl505, I added your question to the Breast Cancer group as well as the Sarcoma group. Fellow members like @jrs2024 @debbie36 @zazu @lee08 @twinsisty1 and others have experience with sarcoma of the breast and can share with you.
@kburl505, you mention that you have spindle cell-type sarcoma. Did further testing show any spread? How did you appointment with oncology go? How are you doing?
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I had undifferentiated pleomorphic spindle cell sarcoma, 2017, 18 years after having lumpectomy and radiation same side. Then 2018 I had triple negative BC, mastectomies and chemotherapy. So far so good
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1 ReactionI’m not sure if you are still looking for replies or answers but I was diagnosed with an undifferentiated spindle cell sarcoma in my breast at 27 years old. I am now 31. I had a mastectomy and reconstruction. The tumor was Less than 3 cm so the recommendation was to not have chemo or radiation with the mastectomy. If I had had a lumpectomy I would have needed radiation. Being so young I didn’t want radiation to cause a secondary cancer when I was in my 40s so I opted for a mastectomy with a DIEP flap. I have chest CT scans every 6 months since 2021 and have been clear since. Let me know if you have any questions. It was hard to find much info on the cancer and what could cause it or true recommended treatments but I am located in Baton Rouge and work in an operating room at a women’s hospital that specializes in women’s cancers so I was fortunate to have this resource going through this.
Nicole