Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Sarcoma Support Group.
Connect
@richardlion
Hello Richard.....surgeons like to cut, that's their specialty and that's what they offer. If possible, find a Radiation Oncologist for a consultation to see if stereotactic radiation is an option in your case. Hopefully, amputation is the last choice in your case.
Dears,
I was diagnosed with Osteosarcoma in my left elbow 4 years ago. It affected my ulna which I had an operation and replace it with a prosthesis. After several scans, one month ago it showed that my Radius has been infected which had an operation to clean it.
Previously I followed chemo treatment for 4 sessions which showed only 20% efficacy.
Can you please help find solution for my case because the surgeon is suggesting for an amputation.
Best Regards
Richard
@sagan7 hi. I have it too.
@colleenyoung There is a wonderful support group for GIST patients. It's called LifeRaft. I recommend that those with Gist get with them. I have lms but before I got my biopsy results I thought it was GIST. Those folks literally held me together while i waited 21 days for my results. The folks I met there still check up on me.
-
Like -
Helpful -
Hug
1 ReactionYour mom must have had an oncologist with the incident in 2023. This is the person to consult with. If not an active relationship, you need to find a sarcoma specialist ASAP at the sarcoma center. I don't think your mom has told you everything. She should have been getting MRI or CT scans every three months to get the best chance at survival. I don't intend to be harsh but sarcoma is never a one and done.
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?
@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?
Mucho ánimo Daisy! Vamos para en frente!
View Translation
@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
View Translation
@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
View Translation