What is Ewing sarcoma?

Cancer starts when cells change and grow out of control. The changed (abnormal) cells often grow to form a lump or mass called a tumor. Cancer cells can also grow into (invade) nearby tissues. And they can spread to other parts of the body. This is called metastasis.

Ewing sarcoma is a type of cancer that most often starts in the bone. It can also start in soft tissues. It’s named after James Ewing, the healthcare provider who first spotted it in 1921. 

The most common places for these tumors to start are:

• Bones in the chest wall, like the ribs or shoulder blade

• Hip bones (pelvis)

• Leg bones

Who is at risk for Ewing sarcoma?

A risk factor is anything that may increase your chance of having a disease. The exact cause of someone’s cancer may not be known. But risk factors can make it more likely for a person to have cancer. Some risk factors may not be in your control. But others may be things you can change. 

Although Ewing sarcoma is rare, anyone can get it. Only a few factors are known to increase risk for Ewing sarcoma, and they aren’t under your control. The risk factors are:

• Age. Most people with Ewing sarcoma are teens.

• Race and ethnicity. Whites (both Hispanic and non-Hispanic) have the highest risk for Ewing sarcoma of all racial groups in the U.S. It’s much less common in Asian Americans and quite rare in African Americans.

• Gender. Males have a slightly higher risk for Ewing sarcoma than females.

Ewing sarcoma doesn’t seem to be linked to family history. This means the risk isn’t inherited from a person’s parents. No environmental or lifestyle factors are known to increase Ewing sarcoma risk.

Can Ewing sarcoma be prevented?

There is no known way to prevent Ewing sarcoma.

What are the symptoms of Ewing sarcoma?

Ewing sarcoma tumors are most often found when they start to cause problems. The symptoms depend on the size of the tumor and where it is in the body. They also depend on if it has spread to other parts of the body. 

These are some symptoms of Ewing sarcoma:

• Pain in a bone, joint, or nearby tissues

• A lump or swelling, often in a leg or arm

• A broken bone that happens without injury

• Fever

Many of these may be caused by other more common health problems. But it’s important to see a healthcare provider if you have these symptoms. Only a healthcare provider can tell if you have cancer.

How is Ewing sarcoma diagnosed?

Your healthcare provider will ask you about your health history, symptoms, risk factors, and family history of disease. A physical exam will be done. You may also have one or more of these tests:

• X-rays

• MRI scan

• Biopsy

Imaging scans, like X-rays and MRIs, can show where a tumor is, how big it is, and if it has spread beyond the bone where it started. A biopsy is the only way to know for sure that a tumor is cancer. A small piece of the tumor is taken out and tested for cancer. 

After a diagnosis of Ewing sarcoma, you’ll likely need more tests. These help your healthcare providers learn more about the cancer. They can help find out the stage of the cancer. The stage is how much and how far the cancer has spread (metastasized) in your body. It's one of the most important things to know when deciding how to treat the cancer.

Once your cancer is staged, your healthcare provider will talk with you about what the stage means for your treatment. Be sure to ask your healthcare provider to explain the stage of your cancer to you in a way you can understand.

How is Ewing sarcoma treated? 

Your treatment choices depend on the exact type of cancer you have, where it is, test results, and the stage of the cancer. The goal of treatment may be to cure you, control the cancer, or help ease problems caused by the cancer. Talk with your healthcare team about your treatment choices, the goals of treatment, and what the risks and side effects may be.

Types of treatment for cancer are either local or systemic. Local treatments remove, destroy, or control cancer cells in one area. Surgery and radiation are local treatments. Systemic treatment is used to destroy or control cancer cells that may have traveled around your body. When taken by pill or injection, chemotherapy is a systemic treatment. You may have just one treatment or a combination of treatments. 

Ewing sarcoma may be treated with:

• Chemotherapy

• Surgery

• Radiation therapy

• Stem cell transplant

Talk with your healthcare providers about your treatment choices. Make a list of questions. Think about the benefits and possible side effects of each choice. Talk about your concerns with your healthcare provider before making a decision.

What are treatment side effects?

Cancer treatment, such as chemotherapy and radiation, can damage normal cells. This can cause side effects like hair loss, mouth sores, and vomiting.

Talk with your healthcare provider about side effects linked to your treatments and what can be done to manage them. There are often things you can do and medicines you can take to help prevent or control side effects.

Coping with Ewing sarcoma

Many people feel worried, depressed, and stressed when dealing with cancer. Getting treatment for cancer can be hard on your mind and body. Keep talking with your healthcare team about problems and concerns you may have. Work together to ease the effect of cancer and its symptoms on your daily life.

Here are tips:

• Talk with your family or friends.

• Ask your healthcare team or social worker for help.

• Speak with a counselor.

• Talk with a spiritual advisor, such as a minister or rabbi.

• Ask your healthcare team about medicines for depression or anxiety.

• Stay socially active.

• Join a cancer support group.

Cancer treatment is also hard on the body. To help yourself stay healthier, try to:

• Eat a healthy diet with a focus on high-protein foods.

• Drink plenty of water, fruit juices, and other liquids.

• Be physically active.

• Rest as much as needed.

• Talk with your healthcare team about ways to manage treatment side effects.

• Take your medicines as directed by your team.

When should I call my healthcare provider?

Your healthcare provider will talk with you about when to call. You may be told to call if you have any of the below:

• New symptoms or symptoms that get worse

• Signs of an infection, such as a fever or chills

• Side effects of treatment that affect your daily function or don’t get better with treatment

Ask your healthcare provider what signs to watch for and when to call. Know how to get help after office hours and on weekends and holidays.

Next steps

Tips to help you get the most from a visit to your healthcare provider:

• Know the reason for your visit and what you want to happen.

• Before your visit, write down questions you want answered.

• Bring someone with you to help you ask questions and remember what your provider tells you.

• At the visit, write down the name of a new diagnosis and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.

• Know why a new medicine or treatment is prescribed, and how it will help you. Also know what the side effects are.

• Ask if your condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if you do not take the medicine or have the test or procedure.

• If you have a follow-up appointment, write down the date, time, and purpose for that visit.

• Know how you can contact your healthcare provider if you have questions, especially after office hours and on weekends.