Epithelial Sarcoma of the Hand... am i alone?

Hey all, I'm new here.

Back in September I had a pesky lump
removed from my left middle finger that had been there for at least 3
years and had caused me no pain. It was misdiagnosed as benign, but
after the surgery the surgeon told me the tumor didn't look like what he
was expecting, and that further testing was needed. It came back as
epithelial sarcoma, an extremely rare and purportedly very aggressive
soft tissue malignancy. I am a 25 year old musician who, after 5 weeks
of radiation, will lose his finger.

However, My initial PET/CT
scans came back clear. So there IS good news, too! My goal lately has
been to keep myself as healthy as possible to help minimize
recurrence/mets, but between these efforts i can't help but feel
concerned about what the future holds. i know its pointless to ruminate
over countless "what if" scenarios- especially considering the rest of
my body is still relatively healthy. but since this type of sarcoma is
so rare, its hard to find comradery with anyone else who has been
through it. Is there anyone out there who has been affected by this type
of cancer that can offer me some advice?

Comments

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  • Hi i am a 16 year old girl who went in with stomach pains and they removed a softball sized tumor from my uterus. Nobody knew if my tumor was benign after several doctors looking at it they told me i had sarcoma cancer but they have no idea what kind. They said the tumor i had was like jelly and there is only 3 documented like it. I was a 16 yr old girl who was healthy and now i have something 60 ear old women get. I under stand havng an extremely rare sarcoma cancer and i would love to talk sometime.

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