A Ewing Sarcoma diagnosis can feel overwhelming, but understanding the disease and available treatments can help patients and families navigate the journey. Seeking expert care, staying informed, and connecting with support groups provide crucial guidance and support.
Because sarcomas are rare, it is important to find physicians and multidisciplinary treatment centers that have experience with this disease.
The Medical centers and hospitals specializing in sarcoma reflected on the map below meet the Sarcoma Foundation of America’s (SFA) criteria, which can be found here. If your institution meet this criteria and would like to be listed, please fill out the form on the SFA website.
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Ewing sarcoma is a rare type of cancer that primarily affects children and young adults. It is a form of malignant tumor that can develop in bones or in the soft tissues surrounding bones.
Key characteristics of Ewing sarcoma:
People with Ewing Sarcoma may have a variety of symptoms, including:
Diagnosis typically involves imaging studies (X-rays, MRI, CT scans), followed by biopsy to confirm the presence of Ewing sarcoma cells and genetic testing to identify characteristic molecular features.
Treatment typically involves a multidisciplinary approach combining chemotherapy, surgery, and/or radiation therapy, with specific protocols determined by the tumor’s location, size, and whether it has spread to other parts of the body.
There have been few improvements in survival of Ewing Sarcoma patients for more than 30 years. Ewing Sarcoma is complex, and more research is needed. For a brief history of Ewing Sarcoma treatment, please see below. Areas of research include gene therapy, targeted drug therapy and immunotherapy.
Ewing Sarcoma is rare — approximately 200 children and teens are diagnosed in the United States annually. It accounts for about 1% of all childhood cancers and is the second most common primary bone cancer in children and adolescents after osteosarcoma. Peak incidence occurs between ages 10-20, with the median age at diagnosis being 15.
Ewing sarcoma is primarily caused by a specific genetic abnormality in the tumor cells that is not inherited:
Yes, Ewing Sarcoma can spread (metastasize) to other parts of the body. In fact, its ability to metastasize is one of the most challenging aspects of treating this cancer.
Common sites of metastasis include:
Clinical trials are available, if and when a patient recurs, following standard treatment. These trials provide patients access to novel treatment methods and drug therapies that are being developed to treat Ewing Sarcoma. Depending on your individual case, you may be eligible to participate in one. The Ewing Sarcoma Institute is pleased to connect you with a free and confidential clinical trial search and trial matching service. Most clinical trials for Ewing Sarcoma include newer “targeted therapy drug” or combinations with immunotherapy.
The outlook depends on many factors, including the location and size of the tumor, whether the cancer has spread and the person’s age and overall health. For more information on Ewing Sarcoma survival rates, click here.
Navigate the path ahead with confidence—download our guide for essential information, resources, and support tailored for patients and parents.
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Ewing Sarcoma treatment has evolved dramatically over the past century, transforming what was once an almost uniformly fatal disease into one with significantly improved survival rates.
We support and highlight cutting-edge clinical trials and research focused on advancing Ewing Sarcoma treatments. By accelerating innovation and expanding patient access, we aim to drive meaningful progress toward more effective and targeted therapies.
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