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Diagnosed with sarcoma? Let's share

Sarcoma | Last Active: 6 days ago | Replies (840)

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@skyrage

I was diagnosed two years ago with Dermafibroprotuberans Sarcoma (dfsp) and honestly, I can't even spell it correctly! It's so rare that I can't even find a doctor who knows much about it. The best thing about it is being called a "unicorn."

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Replies to "I was diagnosed two years ago with Dermafibroprotuberans Sarcoma (dfsp) and honestly, I can't even spell..."

That's what I have, only diagnosed 6ish weeks ago, waiting on a surgery date. Mine is very large, 6" x 4" how did your treatment go? was it just surgery or radiation as well?

Have you gone online and done some research? I would definitely let Mayo take care of you. They are the best.

Not sure if you are talking to me or not. But I had radiation for 5 weeks. They should be able to know how many weeks tp give you and the dosage. Good luck. Think positive and email friends. They can be a big help to keep your spirits up. I even wrote letters to my best friends and family telling them how much I appreciated them, etc. It was very therapeutic

Hello skyrage, and good to hear the unicorn reference! From one unicorn to another, hope your doing well and remain free of dfsp forever more. What region are you from?