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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?
@ctflyr
I second her opinion of absolutely having a sarcoma specialist involved in your analysis of next steps. Sar omas can be very aggressive.
I had a high grade pleomorphic sarcoma with myxoid area on my hip. It was treated with 25 radiation treatments followed by surgery. The tumor was removed. It was 97% dead when removed.
However, now the myxofibrosarcoma has returned in my lungs. Waiting to find out treatment options. Any suggestions as I was told it doesn't respond well to chemo.
@kjm70 I would recommend Immunocine.com. They are working with dendritic cell therapy and have had amazing results.
Thank you for responding. I appreciate your help.
Hola, me llamo Valeria. Soy de Montevideo Uruguay.
Hace 5 meses me diagnosticaron un Sarcoma E3 en el abdomen. TDCRP de unos 15 cm. Estoy entrando en la tercer face de Quimioterapia P6. Ahora me toca la VAC Primer ciclo:
1 día de Vincristina + Doxorrubicina + Ciclofosfamida
Secundo ciclo son 5 dias de: Ifosfamida + Etopósido segundo ciclo
Más Mesna en ambos.
La idea es resecar y extirpar.
Como puedo armar o planificar junto a mis oncologos, el cirujano ideal, creo que esto es un paso super importante y aún no tenemos equipo definido. Me tiene algo preocupada este paso ya que creo que es importante que extirpe la totalidad del tumor. Gracias!
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I haven't been diagnosed yet. I have a lump on my palm below my finger.
@li1701, welcome. I assume you are having chemotherapy to shrink the tumor and help surgery be successful at removing the entire tumor with clear margins. How are you doing on chemotherapy?
@shukktse, how you been to see your doctor to investigate the cause of the lump on your palm?
@colleenyoung
Thank you very much for your message and for your interest in my case.
Yes, I am currently receiving systemic chemotherapy with the goal of reducing tumor burden and improving the chances of a complete surgical resection with clear margins. I am being treated under the P6 protocol, and so far the tolerance has been good, with significant clinical improvement, particularly in pain control and abdominal symptoms.
Follow-up imaging studies are planned in the coming weeks to assess treatment response and to determine surgical feasibility, which represents the next critical step in my management.
Given the extreme rarity of Desmoplastic Small Round Cell Tumor (DSRCT), my local medical team currently has very limited reference cases. At present, surgical planning is being guided mainly by a single published case report from Egypt, which I have attached for context.
For this reason, we are actively seeking expert guidance and external experience, particularly regarding:
- Timing and feasibility of surgery after P6 chemotherapy
- Recommended extent of cytoreductive surgery in similar cases
- Institutional experience with surgical management of DSRCT
Any insight, recommendations, or potential collaboration you could provide would be deeply valuable, as they may directly influence the next phase of my treatment.
Thank you again for your time and consideration.
(https://link.springer.com/article/10.1186/s43046-025-00276-0)
Atte
Valeria Piñeiro
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