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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 long have you had the mass? Had it ever been biopsied? I’m curious because I have a large lipoma on my side…sort of on ribs. It’s been there for 20 years! When it first appeared, I had a surgeon examine it and do a biopsy, which was fine. Wish I had removed it then. Why, oh why didn’t someone encourage me to remove it then……anyway, it started bothering me this year and I had scheduled to have it removed, but had to cancel due to family emergency. Looking forward to getting it removed. Now, I am wondering if it might be more than just a lipoma. I asked the surgeon at my consultation about cancer and he said no way. Idk.
I was recently diagnosed with Well Differentiated Liposarcoma. I had had a large mass on my ribs, between the oblique muscles, that my doctors thought was a lipoma and advised me to leave alone. It got so large that it caused pain with certain movements, so an acupuncturist urged me to have it removed. Two weeks later the pathology report showed it was cancer, not a lipoma. I have since been to MD Anderson for evaluation, and will be returning every 4 months for MRI monitoring. I realize that I am lucky to have a slow-growing cancer that rarely metastasizes, but just the thought of having cancer left in my body (the surgeon thought it was a lipoma, so took it out in pieces, without trying to get it all or assure clear margins) is a little disconcerting. Is anyone else dealing with this type of cancer? Would love to hear your thoughts!
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1 ReactionI was recently diagnosed with recurrent liposarcoma. My previous tumor was retroperiteneal 9 pounds and successfully removed 16 years ago. This is my first recurrence and I have another 4inch x 6 inch tumor in my abdomen. I am scheduled for surgery at Mayo Clinic in Rochester Jan 7. I live in New Mexico but it is very hard getting efficient, effective medical care here. I am reeling somewhat from the news and need for more surgery. Mostly right now I am very, very tired and struggling to keep up with my life. I am very interested if anyone has found positive ways to deal with fatigue.
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1 ReactionTwo growths for me but not as large as original tumor which was 15 pounds. No pain with that one either just gastric output problems due to it pushing everything to right in my body.
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2 ReactionsCan definitely relate to that
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1 ReactionI have extensive tumours. No pain. It is surreal.
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1 ReactionI am in the same position as you. Nothing to do but wait for nature to take me away. Trying to balance anger with calm.
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2 ReactionsI have no symptoms or discomfort at all.
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1 ReactionI appreciate the added information you provided. It looks like you have sought a second opinion which is always a good plan.
Does this condition cause a lot of discomfort?
No treatment planned as it is now not resectable. No know chemo or radiation per another center of excellence. I've converted to mostly plant based diet. Another ct scan planned this month.
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