Ewing sarcoma is a group of bone or soft tissue cancers that affects children, teenagers and young adults. It often develops during puberty when bones are growing rapidly. Ewing sarcoma tumors typically appear in their arms, legs and pelvis. Symptoms may include bone pain, swelling and fever.
Ewing sarcoma is a group of rare cancerous tumors that typically affect teenagers but can also affect younger kids and young adults. Ewing sarcoma, also known as Ewing’s sarcoma and Ewing tumor, usually affects people’s bones, but can also develop in nearby soft tissues. Thanks to ongoing research and newer treatments, more people with Ewing sarcoma are living longer cancer-free.
There are three types of Ewing sarcoma:
No, it’s not common. Each year in the U.S., between 200 and 250 people are diagnosed with Ewing sarcoma. People with Ewing sarcoma may have tumors in their arms and legs, pelvis or spine. The condition typically develops during puberty when young people’s bones are growing rapidly. Ewing sarcoma affects boys and people assigned male at birth (AMAB) more often than it affects girls and people assigned female at birth (AFAB).
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Ewing sarcoma symptoms can resemble common bumps or lumps and bruises on people’s arms, legs and chest. Parents and caregivers may mistake Ewing sarcoma symptoms for kids’ sports injuries. The difference is Ewing sarcoma symptoms go away but then come back, or they get worse. Common symptoms include:
If your child has Ewing sarcoma, one of your first questions may be “Why is this happening?” While there’s no clear answer now, medical researchers know that a genetic mutation, or change, turns normal cells into Ewing sarcoma cells. These cells multiply and create cancerous tumors on people’s bones or soft tissues.
Researchers don’t know what triggers the mutation. But they do know the changes happen after birth. That means biological parents don’t pass the genetic mutation on to their biological children. Researchers also rule out exposure to carcinogens like tobacco, alcohol or chemicals that increase cancer risk.
Risk factors are characteristics or activities that may increase the chance someone will develop a disease like cancer. Ewing sarcoma risk factors are things you can’t change or prevent:
Ewing sarcoma complications include:
Healthcare providers will do a physical examination and ask questions about symptoms. They might also do the following tests:
Imaging tests let providers take a closer look at your child’s bones and soft tissues and determine if there are tumors in other areas of their body. Imaging tests may include:
Providers do biopsies to obtain tissue samples that medical pathologists examine under a microscope. Procedures may include:
Providers may do blood tests to determine if cancer has spread. Tests may include:
Chemotherapy is the most common initial treatment. Other treatments may include:
Your child’s provider may recommend you consider enrolling your child in a clinical trial. In clinical trials, medical researchers test new treatments or combinations of existing treatments to determine if the treatments are safe and effective.
All cancer treatments cause side effects. The side effects vary depending on the treatment. For example, chemotherapy and radiation therapy side effects include:
Regardless of treatment, people with Ewing sarcoma may want to consider palliative care. Palliative care helps ease symptoms and treatment side effects. Palliative care providers also help people understand treatment options.
Kids who have Ewing sarcoma often have late effects. Late effects are health issues that surface months and years after diagnosis or treatment. These health issues may include second cancers, which are new and different cancers that develop long after they’ve completed cancer treatment. Cancer treatment may cause issues with people’s:
There’s no known way to prevent Ewing sarcoma.
Your child’s prognosis, or expected outcome, depends on several factors, like:
Ewing sarcoma survival rates vary depending on factors like a child’s age and whether cancerous tumors spread before diagnosis. Based on age, 78% of kids under age 15 and 68% of teenagers ages 15 to 19 were alive five years after diagnosis.
Survival rates based on tumor location at diagnosis are:
It’s important to remember that Ewing sarcoma survival rates are estimates based on other people’s experiences with the condition. Their situations may be very different from yours. If you have questions, ask your healthcare provider to explain your or your child’s prognosis.
In a way, your child will be living with Ewing sarcoma for the rest of their life. That’s because late effects from cancer treatment can develop years after your child completes treatment. You can help your child by:
Ewing sarcoma typically happens around the time children start puberty. Puberty may feel like you and your teenager are on an emotional rollercoaster with sudden and unexpected twists and turns. A cancer diagnosis may put that emotional rollercoaster into overdrive.
Apart from feeling anxious about their health and coping with side effects, teenagers with Ewing sarcoma may feel frustrated about missing out on everyday activities at school and with friends. They may feel self-conscious about treatment side effects like losing hair. If that’s your family situation, talking with your child may help.
Cancer can turn family life upside down, particularly if it’s cancer in your child. If you or your child are feeling overwhelmed, reach out to the child life specialist on your child’s care team. They’ll give you and your child helpful support and information.
Ewing sarcoma can come back. Once your child completes treatment, they’ll continue to see their provider for follow-up tests, including X-rays, CT scans and bone scans so their provider can detect any recurring cancer as soon as possible.
You should go to the emergency room if your child has an unusually strong reaction to treatment. For example, some treatment side effects include nausea and diarrhea. You should also take your child to the emergency room if you’re concerned they’re dehydrated.
You may feel overwhelmed when you first learn your child has cancer, in part because you don’t know what to expect at a time when you want to do everything you can to help your child. Here are some suggested questions that may help you find out what to expect and what you can do:
A note from Cleveland Clinic
A cancer diagnosis is tough at any age. But it can be especially hard when it’s Ewing sarcoma, which typically affects children and teenagers. If your child has this condition, please remember chemotherapy and other treatments have helped other children live longer cancer-free. Medical researchers are investigating new treatments tailored to Ewing sarcoma. If your child has this condition, ask their healthcare provider about clinical trials that may benefit them.
Last reviewed by a Cleveland Clinic medical professional on 05/26/2023.
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