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Diagnosed with sarcoma? Let's share

Sarcoma | Last Active: 3 days ago | Replies (853)

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@colleenyoung

Hi Vivian, welcome. I'm tagging @kristennursepatient @suzanneb @zaruhi @cali2007 and @erikahamilton, who also have Ewing's Sarcoma.

Vivian, You mention that your sarcoma is "most like Ewings". Do you have a rarer type of sarcoma that acts similar to Ewing's sarcoma? What treatment are they doing for the lung nodules?

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Replies to "Hi Vivian, welcome. I'm tagging @kristennursepatient @suzanneb @zaruhi @cali2007 and @erikahamilton, who also have Ewing's Sarcoma...."

I was diagnosed in 2018 in Michigan with a mass on my back near my right shoulder blade. My GP expected it to be a lipoma so I went to a general surgeon. Whoops. When the biopsy was positive for cancer, I went to University of Michigan Rogel Cancer Center for two additional surgeries-- radical removal to get clean margins and flap reconstruction. The biopsy and research found small blue cell sarcoma, most like Ewings. I also had tiny nodules in my lungs, so I had 7 rounds of chemo: doxorubicin, cyclophosphamide, and vincristine. Then we moved to Phoenix, and I came to Mayo Clinic Phoenix to continue my care 2019-current. I've had four rounds of radiation to nodules as they appear, and most recently just finished 7 rounds of chemo: topotecan and cyclophosphamide. Then my CT last week shows I may have Valley Fever, awaiting blood test results, or more masses in my lungs I've been very positive throughout and during Covid isolation. But this new challenge is a shock. I rarely go out, always wear a mask, and take care of myself. Cancer sucks!