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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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@carolak
The biopsy determined the type of soft tissue tumor -- synovial. It is rare. It presented as a small, now marble size, lump in my thigh. It's firm like a gum drop. It sits near or on a nerve. Have yours checked more. Since it is rare, your primary doctor may not recognize it.
I will have surgery after the 15 Proton Beam treatments.
I can walk and work.
Bumping the tumor hurts the most, but it can be a sharp pain just lying in bed.
@hjemma
Hi thank you for the response!
Yes it does hurt on and off. Sometimes intense and other times not so much !
What is a synovial sarcoma ?
Could you feel a nodule or lump or anything ? And I think I'm understanding you have not had any surgery at this point ?
Appreciate your response
@carolak
My doctor started with biopsy to determine that I have a malignant synovial sarcoma in my thigh. Cancer does hurt, at least for me on and off. I also had MRI and a CT scan of lungs to determine if metastatic. Treatment plan is Proton Beam 15 times, then surgery.
While not all sarcomas are malignant, you can't know without a biopsy. Get to a sarcoma center rather than doing surgery before even a biopsy. Best wishes.
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2 Reactions@ctflyr
Thank you .. makes total sense. I'm a 25 year breast cancer survivor. So this becomes concerning . Appreciate you
@jeshaw6801
Hi and thank you for your suggestions I'm going to try the Moffit Cancer center in Tampa !! If not feeling good vibes there I will try Cleveland.
Appreciate you
@carolak please send sarcoma specialist at a sarcoma center ( one that handles more than 200 sarcoma cases per year). A good one in ohio is Cleveland Clinic in Cleveland bor the James center in Columbus (ohio state). Good luck, at getting some competent advice
@carolak
Hello Carolak.....I'm not sure how your Dr would know you have soft tissue sarcoma, or not, without a biopsy...."because cancer usually doesn't hurt"??? As you've described it that way, how would you know? A biopsy, provided you have the time and interest, would be crucial to any treatment decision. While surgery is the preferred method to treat early stage resectable tumors, you could benefit from knowing the type of sarcoma, it's stage, and other important information that can be derived from a biopsy. While your Dr may like to cut, you may be wise to pursue a biopsy first.
Hi
I was told I have soft tissue sarcoma on thigh. Drs said the tumor size of small quarter is sitting on a nerve and causing pain on and off. He also said not to worry it is cancer because cancer usually does not hurt !!! Does this sound reasonable ? I have not had biopsy he just wants to do surgery . And how is that surgery done ?
Thanks
Carolak
@manip yes but pazobanib stopped working, two new treatments did not work. During that time new findings appeared. rib in back near spine and small lesions on liver and kidney. Radiation on rob, ablation soon on the next area. Systemic treatment Doxil is working (4th cycle) so good news there.
@fighter123 Hi how are you doing with the SFT? Did you do radiation? Did it ever return?