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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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started new chemo yesterday, erubilin
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1 ReactionI have spots on lungs.
New chemo yesterday, erubilin
Trying ebulinin
Oh dear...my Dads resulted from a skin tag misdiagnosed as benign (should have been diagnosed as undifferentiated pleomorphic sarcoma). Sorry to hear it’s metastasised to lungs - let me know how you get on, Dad has the same xx
Hello. I have the uterine leiomyosarcoma as well. Full hysterectomy in 2021. In 2022 removed a tutumor from my lung. I have been told the same information. I have follow up ct scans every 3 months and hope each time that I have clear scans. With all my research and w my drs I find the the same information you have. That I need to remove the tumors are they come up. If I learn anything new I'll post to you.
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3 ReactionsAlthough rare, Sarcomas seem to be becoming more prominent. I had radiation induced Angiosarcoma of the breast in 2019 (age 60) with a reoccurance in 2021........... Both required surgeries only. Unfortunately, the cancer has metastasized to the lung. .......so now it’s the waiting game for the lung biopsy. THE WAITING IS THE WORST ESPECIALLY WITH SUCH AN AGGRESSIVE CANCER. Prayers to all.
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4 ReactionsWas this for metastatic sarcoma that has spread to lungs?
I see.
My name is Gloria. I am diagnosed with Uterine leiomyosarcoma. In 2020 I had a stage 1B tumor removed from uterus. I also had a complete hysterectomy. The tumor was estrogen sensitive so I was placed on Letrozole. The side effects have been challenging. Two and a half years in a mass was found through a CT scan. Pet scan reveled no spread. Tumor was removed laproscopically. Tumor was located on right side attached to lower branch of aorta. Genetic study to be conducted. So far I am told only treatment is to remove tumors as they appear. Not sure what questions to ask the medical professionals or how to advocate for myself effectively. I read conflicting information with what my oncologist is telling me, "that radiation and chemo are not effective for this type of cancer" but see trials with chemicals and radiation therapy. Would like to know and understand more about treatments why they work or why not. Also want to know if continued use of Letrozole will be effective in some way. Appreciate any information/advice you may have about this issue.
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2 ReactionsHello, My name am Musajja ivan from Uganda it's been long time feeling this pain in my bones and at those points in the photos and I think it's Osteosarcoma cancer, my question is, it treatable and can I manage to get an appointment for treatment and at how much thanks