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Diagnosed with sarcoma? Let's share
Because sarcomas are rare, I would like to start a conversation to help connect people living with sarcoma or caring for someone with sarcoma.
As you know, sarcoma is the general term for a broad group of cancers that begin in the bones and in the connective or soft tissues (soft tissue sarcoma). There are many different types and sub-types of sarcomas, for example: angiosarcoma, chondrosarcoma, Ewing’s sarcoma, fibrosarcoma, gastrointestinal stromal tumor (GIST), Kaposi's sarcoma, leiomyosarcoma, liposarcoma, malignant peripheral nerve sheath tumor, osteosarcoma, pleomorphic sarcoma, rhabdomyosarcoma, synovial sarcoma and more.
Let's get to know one another. Why not start by introducing yourself? What type of sarcoma have you been diagnosed with?
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Scan came back with no evidence of metastatic disease. Consult with cosmetic surgeon moved up to tomorrow. Should have a surgical date soon.
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2 ReactionsThis sounds promising and that you are in good hands. I'll be interested in hearing about next steps after the scan. First I wish you a sound sleep tonight.
The meeting went well. While still greatly concerned, I don't have the level of fear that I had when I left the dermatologist. I have a CT scan of my lungs tomorrow. The oncologist believes we caught this fairly early. She has successfully treated very similar sarcomas and sees nothing out of the ordinary with mine. We will schedule surgery quickly after the scan. She indicated that will include a 2 cm margin. No radiation or chemo is anticipated, but of course, that could change with findings.
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1 Reaction@wandrew, how did the meeting go with the surgical oncologist? Are you considering a second opinion? What's the treatment plan?
Yes my Dad has this now - he had a skin tag taken off his back which was supposedly benign until he has been found to have lung metastases and it’s been rediagnosed as undifferentiated pleomorphic sarcoma - please let me know you get on. Dad is starting trabectadin chemo in 2 weeks. Make sure you have regular CT as this is how Dads has spread - he had no follow up as they thought it was just a benign skin tag - Good Luck x
My mom had a different sarcoma. I remember how scary the waiting phase was. I'll be praying for you!
I'll be praying for you!
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1 ReactionOur daughter has had a clear cell sarcoma mass removed from the palm of her hand. She had surgery to remove the mass, then painful radiation for 5 weeks. She will lose her 3 middle fingers next week. She is a mechanic & an athlete. She is worried about her quality of life going forward. Will she have any chance to work in her field. Will she be able to continue her athletic pursuits (2 time Ironman competitor).
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3 ReactionsMy mom was just diagnosed with Undifferentiated pleomorphic sarcoma after having what the doctors said was a cyst removed from near her elbow. I’m so worried about her, we are having the first appointment with the oncologist in two days. I just wanted to see if anyone here had this type of cancer and what their experience was with it. Thank you
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1 ReactionAbsolutely! My mom got her ultimate healing, but my aunt's mom lived for many, many years with the same type of cancer my mom had.