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Diagnosed with sarcoma? Let's share

Sarcoma | Last Active: Nov 8 5:59pm | Replies (840)

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@vivianfromaz

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!

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Replies to "I was diagnosed in 2018 in Michigan with a mass on my back near my right..."

Oh gosh, @vivianfromaz, I sincerely hope you don't have Valley Fever or that it is easily manageable.

@damlady2, amputation would be life-altering. I can understand your hesitancy. Are you having to make a decision about surgery or not at this point or not yet?

@spadafarm, as you can see there are several sarcoma survivors here who are Mayo Clinic patients. If you have questions about Mayo or as you prepare, please ask.