Resources for Patients & Families

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.

Sarcoma Treatment Centers

Ewing Sarcoma Treatment Centers
Patient & Family Resources

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.

Search for a Clinical Trial

The Ewing Sarcoma Institute is pleased to connect interested parties with CareBox, a free and confidential service to search for clinical trials and that can guide you through a search and referral process to find a clinical trial that may be right for you. This search and matching system shortens the clinical trial search process from weeks to minutes, helping users identify clinical trials with eligibility criteria that match a patient’s specific diagnosis, stage, symptoms, and treatment history. Search the national database of Ewing Sarcoma trials and/or fill out your contact information below, and a Carebox Clinical Trial Navigator will call you within one business day. Se habla Español.

Dealing with Ewing Sarcoma

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Diagnosis

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Treatment

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Recovery

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Frequently Asked Questions

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:

  • Origin: It typically develops from cells in the bone or soft tissue neuroectodermal cells
  • Age range: Most commonly affects people between 10 and 20 years old, though it can occur at any age
  • Genetic basis: Associated with a characteristic genetic abnormality in the tumor cells – most commonly a translocation between chromosomes 11 and 22, creating an EWS::FLI1 (EWSR1::FLI1) fusion gene
  • Common locations: Most frequently affects long bones (femur, tibia), the pelvis, ribs, and spine, though it can occur in any bone or soft tissue

People with Ewing Sarcoma may have a variety of symptoms, including:

  • Pain and swelling at the tumor site
  • Bone pain that may worsen at night or with activity
  • Fever
  • Fatigue
  • Unexplained fractures due to weakened bone

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.

With any cancer treatment, there are side effects. This is also true for Ewing Sarcoma treatment. Chemotherapy side effects can include hair loss, nausea, fatigue, weakness, loss of appetite and weight loss. These side effects will resolve when chemotherapy is completed. Surgery often involves use of an internal prosthesis and rarely an external prosthesis. Physical therapy can be provided as you heal to help guide rehabilitation and ensure strength and movement are regained in the safest way possible.

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:

  • Genetic translocation: In approximately 85% of cases, there is a translocation between chromosomes 11 and 22, creating an EWS::FLI1 [EWSR1::FLI1] fusion gene
  • In the remaining cases, the EWSR1 gene fuses with other genes encoding other ETS family transcription factors
  • These genetic changes occur spontaneously (not inherited) and most likely happen after birth

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:

  • Lungs (most common site of distant spread)
  • Other bones beyond the primary tumor site
  • Bone marrow
  • Less commonly, to lymph nodes and other organs

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.

The Post-Diagnosis Ewing Sarcoma Guide

Navigate the path ahead with confidence—download our guide for essential information, resources, and support tailored for patients and parents.

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A Brief History of Ewing Sarcoma Treatment

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.

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