Our Petition

Our Petition of Support to Increase Research and Clinical Trials for Chondrosarcoma

  • Chondrosarcoma is a rare bone and soft tissue cancer. Estimates are it effects 4,500 -9,000 worldwide each year.
  • No one knows the origin of Chondrosarcoma or whether a hereditary pre-disposition exists.
  • There is no known cure for Chondrosarcoma.
  • The only treatment for Chondrosarcoma is the surgical removal of the tumor(s) / masses with wide margins, many times involving the removal of limbs: legs or arms.
  • Traditional chemotherapy and radiation appear to be ineffective in treating Chondrosarcoma.
  • Beyond surgical removal of the tumor, there appears to be no post-surgical treatment options available. There are no medications that could be used as a prophylactic to prevent Chondrosarcoma from reoccurring.
  • Chondrosarcoma is difficult to diagnose. According to the last survey done by the Bone Cancer Research Trust (BCRT, 2020); 65% of all cases are misdiagnosed. To accurately diagnose Chondrosarcoma, a surgical pathologist from a Sarcoma Center is needed to properly diagnose, classify and grade Chondrosarcoma.
  • There are different types of Chondrosarcoma from non-malignant enchondroma/chondromas to aggressive Mesenchymal and Dedifferentiated Chondrosarcoma. There is also Conventional Chondrosarcoma, consisting of three grades. Grade 1 has a good prognosis but Grade 3 has a poor prognosis.
  • No one knows if or how much Chondrosarcoma will reoccur, spread and grow after surgery or whether Chondrosarcoma could evolve from a low grade to a higher deadlier grade of Chondrosarcoma.
  • Because Chondrosarcoma is a rare cancer the public is unaware of its existence. Because it is not susceptible to chemotherapy or radiation, many people think it is not actually cancer.
  • Because Chondrosarcoma is a rare cancer it does not get the attention that other typical cancers including lung and breast cancer, but its consequences are just as serious and deadly.
  • Because Chondrosarcoma is so rare only a handful of research and clinical studies exist to treat this form of cancer.
  • Clinical Research on Chondrosarcoma has identified medications that can be used to inhibit or suppress Chondrosarcoma cancer cell growth provided specific biomarkers in the cancer cell exist. There are also some positive preliminary laboratory results using cancer stem cells. More research and clinical trials are needed to confirm these findings.
  • • What to do if you are diagnosed with Chondrosarcoma:
    • Find a Sarcoma Specialist with a multidisciplinary team at a Sarcoma Center.
    • Go to Sarcoma Centers | Sarcoma Alliance to find a Center near you.
    • Make sure your biopsy is reviewed by a Surgical Pathologist that specializes in bone and soft tissue cancers to properly diagnose, classify and grade the tumor.
    • Consider genomic screening of your tissue sample to determine if they include any biomarkers for medications that may inhibit / suppress cell growth.
    • When needed do not hesitate to get a second or even third opinion from a sarcoma specialist to determine all options available.
    • You and your family must Take Charge of Your Care, make informed decisions that are right for you.

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