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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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I was recently diagnosed with chondrosarcoma on my sacrum. I finally have an appt at Mayo on August 29th. I have lots of pain and really looking forward to working with the specialists there. I went through 5 different Dr's until I finally drove myself to the ER. They finally did a CT and found the mass. I knew for months that something was going on and finally someone listened. This could've been taken care of months ago. Instead I lived in severe pain for months. So happy my oncologist referred me to Mayo.
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8 ReactionsI hope you are relieved from your pain soon . My husband had a chondrosacroma removed from the base of his skull, twice at Jackson Memorial Hospital in Miami. Good luck and thank god they finally found it .
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3 ReactionsHad mastectomy 3 weeks ago for SECONDARY ANGIOSARCOMA .
3 and 1/2 years ago had lumpectomy and radiation treatments.
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1 ReactionThank you for your caring response. I too attend the monthly Sloan-Kettering support group, but didn’t know if others had Synovial Sarcoma.
I’m glad you’ve had five years free. I see oncologist tomorrow to get explanation on latest MRI of leg.
Did you have chemo treatments? Radiation?
Hello, I have been diagnosed with Solitary Fibrous Tumor. I had a painless “bump” near the center of my back which was believed to be a cyst. Upon removal, the bump was sent to pathology for analysis. It was still a bit unclear, so the tumor was then sent for NGS TESTING. I was then given this diagnosis. There is very little information on this condition as it’s fairly rare. Does anyone have a similar story? If so, how are you doing now?
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1 ReactionHere, I just want to help my brother-in-law. My brother-in-law has been diagnosed with High-grade sarcoma or leiomyosarcoma.
Here are the details:
Diagnosis: The biopsy from a retroperitoneal mass is identified as High-grade sarcoma or leiomyosarcoma.
Supporting Information:
History: The patient presented with a large mass in the right retroperitoneal area. This mass has spread extensively to the liver and lungs. There's a clinical suspicion that this mass is a sarcoma. The CT scan indicates the features of a retroperitoneal sarcoma that has infiltrated nearby organs including the right kidney, right ureter, IVC, and abdominal aorta. Additionally, the CT scan shows that the cancer has metastasized extensively to the liver and lungs.
Nature of the Specimen: The biopsy of the retroperitoneal mass was obtained with the help of ultrasound guidance.
Gross Features: The biopsy includes multiple strips of tissue that range in size from 3mm to 15mm. These strips were all placed in one block.
Microscopic Details: The biopsy displays malignant cells that are spindle-shaped. These cells have a variety of features such as nuclear changes, the arrangement of cells, the presence of tumor necrosis, and more. The cells are particularly notable for their aggressive appearance and activity.
Immunohistochemistry: This is a test that uses antibodies to determine the type of cells present in the biopsy. In this report, the malignant cells tested positive for certain markers like smooth muscle actin, desmin, and caldesmon. Some cells were weakly positive for CD34. The malignant cells did not test positive for MDM2, S100, stat-6, and myogenin.
Does anyone have a similar story? If so, how are you doing now, and could you share your story and treatment methods? Thank you.
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2 ReactionsGu,
I am recently diagnosed with Leiomyosarcoma. I am interested in chatting with others who are walking this walk.
Hello,
I was diagnosed with leiomyosarcoma in 2018 and only discovered this site yesterday! But this path has taught me that everything happens in perfect timing, so… It looks like we’re “walking buddies.” 😊
Nice to connect with you. I’m interested in chatting, too.
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2 ReactionsMy husband has had a chondrosacroma of the skull twice . It has been a very very long difficult road . It is so rare. Would you like to connect?
I would love to hear more about you and your husband’s journey. I had no idea that there even was such a thing. I can’t imagine what it must feel like to have it in your skull.