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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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Anyone been diagnosed with "Low Grade Fibromyxoid Sarcoma"?
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1 ReactionThank you for following up with me. I have been on the fence about it. I have been thinking about getting a 2nd opinion.
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2 ReactionsI just want to sleep and drink my juice
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2 ReactionsI was dx with angiosarcoma in the skin on my left cheek in Fall of 2012. I had cancerous tissue removed and 30 radiation treatments in Jan. of 2013. I had no reoccurrence until this year. It showed up adjacent to where it was before but closer to my eye and nose. Surgery gave clear margins except near lacrimal duct. I will have more tissue in that area removed next. Reradiation is off the table and I am wondering is any places are using adjunct therapies in my situation. CT and MRI show no metastasis to any other area.
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1 ReactionAlso for info below -
A lipoma is a non cancerous (benign) lump that forms due to an overgrowth of fat cells. You can get a lipoma anywhere on the body where you have fat cells. Lipomas are not cancer. Cancerous tumours of the fat cells are called liposarcomas.
Hi
Not sure if you’ve seen my earlier post but my Dad had a ‘benign’ skin tag removed from his back...13 months later has multiple lung metastasis and now diagnosed as sarcoma (UPS). He is currently undergoing Trabectadin chemo. Please make sure you ask for a CT scan to check your lungs (or PET scan even better). I don’t want to scare you but this is the exact misdiagnosis that my Dad had - told it was a benign atypical fibroxanthoma but it is UPS which comes with a much worse prognosis. They will argue it is very difficult to distinguish between the two but please go for follow up and I wish you all the very best
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1 ReactionIt's been just over a year since I finished treatment for Ewings Sarcoma and they said there was no evidence of disease. I'm still constantly anxious that it's going to come back. Especially since with my age group and location, the overall 5-year rate was relatively low with a significant chance of recurrence. I remember when they initially found it I could not stop overanalyzing and researching. I spent countless hours looking at studies and articles but all that did was make me more anxious. How do you deal with all the anxiety?
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Do anyone knows if Zantac Medication cause GIST CANCER
I went to a general surgeon for a mass/bump on the back of my upper left shoulder. He believed it to be a harmless lipoma & it was elective to remove it. I chose to remove & he ordered an ultrasound. It was removed as outpatient. The pathology took extra time yo come back. The doctors front desk staff called telling me it was a benign lipoma sarcoma & not to Google it due to it would scare me. They said he got it all but I would need to return every 6 months for 2 years. I returned February 2023. He stopped in the room for a short time and took a quick look. I don’t understand the term benign lipoma sarcoma. I assume it means it’s not cancerous. But it’s a sarcoma? Any thoughts on the diagnosis would be appreciated. Thank you