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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
Prayers for you. I guess it was my Family Med doc who ordered the US w/biopsy because I asked. I don't know if Ortho or Oncology would have started there or not. Maybe yours is small enough and away from other structures that you don't need to shrink it first. Keep asking the questions, like, how often do you see this?
@carolak
Hi Carolak....I'm not sure what the Dr at Moffett's specialty is, but to assume things without testing isn't very reassuring. A biopsy will provide detailed information about what your growth actually is, and can provide needed guidance on a treatment plan. By doing surgery first without any other knowledge of what you're dealing with, it may cause you to miss important treatment steps. Is the Moffett Dr a sarcoma specialist, or sarcoma surgeon? He should have this specialty to actually help you. If not, you should go to a sarcoma specialist or clinic for better guidance. As you are a breast cancer survivor, you need all the details you can get on this new growth. Wishing you well in your journey and the time ahead.
@hjemma
Hi I've had MRI and ultrasound. I went to a regular surgeon and an orthopedic surgeon each said they did not want to touch it and sent me to Moffit cancer center in Tampa. That Dr looked at pics and told me a soft tissue sarcoma and to have surgery. Said it was probably on a nerve and that causing pain. Said it would not go away He is Also the dr who said probably not cancer because it hurts. Did not offer to do a biopsy .. and sadly I didn't think or ask about a biopsy. He did say they would test it . That's as far as I've gotten Thank you for response.. and no chest or other X-rays or scans on body
@carolak Have you had a diagnostic ultrasound or other imaging? Also a scan of lungs to make sure it did not spread?
@jeshaw6801
If it's a tumor albeit in not very large but have pain on and off Dr suggested having it removed as it will continue to grow . Also he indicated they would send to the lab to check for cancer, so is it critical to have a biopsy prior to the surgery that's bound to having ?
@hjemma
Oh my gosh sounds a lot like mine. Had some pains in my thigh several months ago( on and off). Then found a marble size lump and it started hurting more. Kind of achey but really hurt if I bumped it or touched it. I guess if it's something that has to come out they will do a "test " to see if cancer or not. I will have it taken out and guess see what the results show and hopefully not cancer. But it sounds so so much like my symptoms. Prayers for you
@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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1 Reaction@ctflyr
Thank you .. makes total sense. I'm a 25 year breast cancer survivor. So this becomes concerning . Appreciate you