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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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Thanks for replying. I will see my oncologist tomorrow. After much research I am better prepared for not such good news. I think it helps to not be surprised so that one can more easily absorb important information and try to behave appropriately especially in the presence of a loved one.
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1 ReactionWhen I was trying to do research for my mom, it was VERY hard to find research on sarcomas. I think because they are so rare? There is only one sarcoma specialist in Indiana, and we didn't know anyone with her type of sarcoma (leiomyosarcoma). I'll be praying for you! I know this is such hard news. It was for my mom, and it was for me - her only child.
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1 ReactionI think I may be very lucky in that we are only 1-2 hours south of Emory in Atlanta. My oncologist was described to me as a surgical specialist in osteo sarcoma. I am 78 and remain hopeful but not naive and if necessary I will contact Anderson specialists in Jacksonville Florida. I'm so sorry for you and your mother. It must surely have been heartbreaking for you both. I'm only now beginning to realize the impact this will have on my family. I have chosen not to reveal any of this until I have a much better understanding of my options if any. If I can remain positive and upbeat it will certainly be much easier on them. Thanks again for your prayers. God in His wisdom will carry me thru.
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2 ReactionsAbsolutely! 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.
My 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 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 ReactionsI'll be praying for you!
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1 ReactionMy mom had a different sarcoma. I remember how scary the waiting phase was. I'll be praying for you!
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
@wandrew, how did the meeting go with the surgical oncologist? Are you considering a second opinion? What's the treatment plan?