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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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@ctflyr
Thank you. I am presently looking at everything and just gathering information. I appreciate your sharing this. Deb
@manal10
You are a good friend.
My grandson, age 18 was diagnosed with the very same diagnosis this past August. I have been on this site since that time and have found it to be a port in the storm. The recommendations were like a potential lifeline. However, it was the connection with others that carried the day.
Since we are all in different places in this journey, please let me know where your friend is with all of this and what information would be helpful. At this point, my only advice is to take one day at a time and continue seeking support.
@debschmalbach
In reply to your "Outside Referrals " post......
Hi Debi......
Christus-St Vincent in Santa Fe has a new cancer center and they are in the Mayo network. They could work directly with your Dr at Mayo. If that's not helpful, try MD Anderson in Houston or Cedars-Sinai in Los Angeles. Also, try sarcomaalliance.org for other recommended sarcoma centers. Best wishes in getting the support you need!
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Thank you very much. I will definitely look into the one in Santa Fe. That’s not too far from me. Thank you very much.
I was diagnosed on January 20, 2026 with GIST on the middle of my esophagus. My surgery is pending my CT Scans and genetics testing of the biopsy sample and my blood.
@daysiperu Hola daisy, que tal? mi hijo fue diagnosticado con un sarcoma epitelioide, ha recibido 6 ciclos de quimio y vana realizarle un procedimiento que se llama PERFUSION DE MIEMBRO que tiene como objetivo evitar la amputación de su pierna. Al mismo tiempo ha sido recetado una terapia dirigida que se llama TAZEMETOSTAT que es un inhibidor especificamente para el sarcoma epitelioide. Ambos son tratamientos caros, pero aqui en Brasil es cubierto por el seguro medico
Espero que te haya ayudado.
Un saludo
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@mariagonzb43 también me gustaria si hay alguien que pueda compartir su experiencia con sarcoma epitelioide, aun no he conseguido contactar con nadie con este tipo de sarcoma raro.
Gracias
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Mucho ánimo Daisy! Vamos para en frente!
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@ziahlita, welcome. You may wish to connect with members living with GIST in these related discussions:
- Anyone been diagnosed with GIST Tumor in the stomach?https://connect.mayoclinic.org/discussion/gist-tumor/
- Anyone have experience with gastrointestinal stromal tumor (GIST)?https://connect.mayoclinic.org/discussion/gist-cancer/
Any updates on genetic testing or surgery date? How are you doing?
My mother has been suffering from dedifferentiated liposarcoma (retroperitoneal mass). He underwent surgery on June 2023 and again in 2026 recurrence occurred. But this time major Organs has been involved and doctor saying that chemotherapy is not effective in this type of cancer. Can anyone share who underwent through this type of cancer which medicines are effective?