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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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How was the healing of the incision? I’m scheduled for surgery to have a large one removed from my side. I’m trying to gauge how uncomfortable I will be afterwards, for planning some events in the days following. Much pain? Swelling?
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1 ReactionGood morning, I am having a hard time right now. My husband has been diagnosed with Metastatic Sarcoma in his right shoulder. Praying for strength to help him through this, he is having significant pain in his arms.. Praying or each of you also.
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3 ReactionsMy husband had a fibrous soft tissue sarcoma in his left shoulder discovered summer 2023. I understand how you feel. His scapula, ball/ joint, and part of his humorous was amputated. He in managing better than expected as we navigate a new normal. Praying for you both through the upcoming challenges. The Mayo Clinic was exceptional and worked so well as a team. Grateful to be able to go tthere. Sending positive support to you both.
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1 ReactionThank you so much, praying for you guys.
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1 ReactionHello,
My son's shoulder movement is still not completely normal. elbows and fingers are all moving normally. As soon as we came out of the operation, we saw his fingers moving and we cried uncontrollably. Now he is playing volleyball again. plays with the other hand without using the hand with the implant.
Thank you
Buugii
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3 ReactionsWelcome @yrobertson. I'm so grateful that @lizbeth1 has walked this path just a few steps ahead of you and can offer support and understanding.
@yrobertson, I can imagine it is hard to see your husband in such pain. Has a treatment plan been discussed? What is next for you both?
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2 ReactionsThank you for asking. No plan has been made yet. He has to have a Pet scan to see if it has spread and then we will know. I'm having a had time trying to not be emotional in front of him. I'm a therapist, but this one is my heart.
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2 ReactionsPleomorphic in the retroperitoneal.
pleomorphic sarcoma
Hello,
I am living with a form of soft tissue sarcoma called solitary fibrous tumor (formerly called Hemangiopericytoma). In 2005 a mass was removed from my head in 2005 (then considered then considered “locally destructive.). Lump was initially dismissed by my primary care physician as a cyst (no tests ordered), I was told to call back if I wanted it removed. Six momths later I asked for this, a tumor was found and removed by Peter Black at Brigham and Women’s in Boston. He ordered 30 brain MRIs as a precaution and to prevent recurrence. Well it came back 15 years later and I was diagnosed again with a Stage 4 no cure metastasis, this time tumors in hipbones, left shoulder and 2 in the lung. Currently being treated at Dana Farber here in Boston with pazonapib and have a had few rounds of radiation too. I am doing ok but open to clinical trials for a possible cure some day, presuming that sarcoma specialists at Mayo share this information with Dana Farber practitioners? There is always hope.
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