Patient education: Ewing sarcoma (The Basics)

What is a Ewing sarcoma? — A Ewing sarcoma is a type of cancer that happens most often in the bone. It happens when normal cells in the bone change into abnormal cells and grow out of control. But in some cases, a Ewing sarcoma starts in tissues outside of the bone.

This cancer happens most often in children and teens ages 10 to 20, but it can also happen in adults. A Ewing sarcoma most often affects bones in the legs, arms, or pelvis.

What are the symptoms of a Ewing sarcoma? — A Ewing sarcoma usually causes pain and swelling in the area of the cancer. The pain can come and go, but it usually gets worse over weeks to months. The pain is usually worse at night and with exercise. Some people might also see or feel a lump on their bone.

People can have other symptoms, too, depending on where the Ewing sarcoma is. For example, if the Ewing sarcoma is close to a joint, it can cause trouble with moving that joint.

Some people also have a fever or weight loss, or feel more tired than usual.

All of these symptoms can also be caused by conditions that are not a Ewing sarcoma. But if you have these symptoms, tell your doctor or nurse.

Is there a test for a Ewing sarcoma? — Yes. Your doctor or nurse will first order an X-ray of your bone.

If the X-ray suggests a Ewing sarcoma, you will have other tests. These might include:

●Blood tests

●Imaging tests – Imaging tests create pictures of the inside of the body. Your doctor or nurse will order imaging tests to look at the area that might have a Ewing sarcoma. These tests can also check for cancer in other parts of your body.

●Biopsy of the Ewing sarcoma – This is a procedure in which a doctor removes a sample from the area suspected to have cancer. Then, another doctor looks at the sample under a microscope.

●Bone marrow biopsy – The bone marrow is the tissue in the center of certain bones. During this procedure, a doctor takes a very small sample of the bone marrow. Then, another doctor looks at the sample under a microscope.

What is cancer staging? — Cancer staging is a way in which doctors find out if a cancer has spread past the layer of tissue where it began, and, if so, how far.

The right treatment for you will depend a lot on the stage of your Ewing sarcoma and your other medical problems.

How is a Ewing sarcoma treated? — A Ewing sarcoma is usually treated with both surgery and chemotherapy.

●Surgery – The type of surgery you have depends on where your cancer is and how big it is. For cancer in an arm or leg, doctors usually do "limb-sparing" surgery. This is when the doctor removes the cancer without removing the arm or leg. Depending on the type of surgery, the doctor might need to "rebuild" part of the bone after surgery.

●Chemotherapy – Chemotherapy is the medical term for medicines that kill cancer cells or stop them from growing. People with a Ewing sarcoma usually have chemotherapy both before and after their surgery.

Some people with a Ewing sarcoma might be treated with radiation therapy instead of surgery. This involves getting high doses of X-rays (radiation) aimed at your cancer. Radiation kills cancer cells. Some people might have radiation therapy after surgery, especially if their doctor can't remove all of their cancer during surgery.

What happens after treatment? — After treatment, your doctor will check you every so often to see if the cancer comes back. Follow-up tests can include exams, blood tests, chest X-rays, and imaging tests.

Watch for the symptoms listed above. Having those symptoms could mean that your cancer has come back. Tell your doctor or nurse if you have any symptoms.

What happens if my Ewing sarcoma comes back or spreads? — If your Ewing sarcoma comes back or spreads, you might have more surgery, radiation, or chemotherapy.

What else should I do? — Follow all of your doctor's instructions about visits and tests. It's also important to talk to your doctor about any side effects or problems you have during treatment.

Getting treated for a Ewing sarcoma involves making many choices, such as what treatment to have. Always let your doctors and nurses know how you feel about a treatment. Any time you are offered a treatment, ask:

●What are the benefits of this treatment? Is it likely to help me live longer? Will it reduce or prevent symptoms?

●What are the downsides to this treatment?

●Are there other options besides this treatment?

●What happens if I do not have this treatment?

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