Overview

Ewing sarcoma is a rare type of cancer. It’s most common in children and teens between the ages 10 and 19. It usually grows in bone, but it can also grow in soft tissue that’s connected to the bone. This may include tendons, ligaments, cartilage, or muscles.

For more information regarding pediatric ewing sarcoma services in St. Louis, please call 314.454.5437 or 800.678.5437 or email.

Ewing sarcoma most often grows in:

  • Bones of the legs, hips and pelvis, chest, and arms
  • Soft tissue of the torso, arms, and legs

Causes

The exact cause of Ewing sarcoma is not known. The cancer may be caused by changes in the DNA of the cells. These changes are not passed on from parents to children. They happen by chance.

Symptoms

Symptoms can occur a bit differently in each child. They can include:

  • Pain around the site of the tumor that may come and go, but gets worse over time and with activity
  • Swelling  around the site of the tumor
  • A lump (mass)
  • A bone breaks for no known reason
  • Fever
  • Weight loss
  • Feeling tired

The symptoms of Ewing sarcoma can be like other health conditions. Make sure your child sees a healthcare provider for a diagnosis.

Diagnosis

Your child's healthcare provider will ask about your child's health history and symptoms. He or she will examine your child.  Your child may be referred to a specialist. This may be a bone specialist (orthopedic surgeon) or a bone cancer specialist (orthopedic oncologist). Your child may have tests such as:

  • X-ray. An X-ray uses a small amount of radiation to take pictures of bones and other body tissues.
  • Blood tests. The blood may be tested to look for signs of Ewing sarcoma.
  • CT scan. This test uses a series of X-rays and a computer  to make detailed images of the body.
  • MRI. This test uses large magnets, radio waves, and a computer to make detailed images of the inside of the body.
  • Bone scan. A small amount of radioactive dye is injected into a vein. The whole body is scanned. The dye shows up in areas of bone where there may be cancer.
  • Positron emission tomography (PET) scan. For this test, a radioactive sugar is injected into the bloodstream. Cancer cells use more sugar than normal cells, so the sugar will collect in cancer cells. A special camera is used to see where the radioactive sugar is in the body. A PET scan can sometimes spot cancer cells in different areas of the body, even when they can’t be seen by other tests. This test is often used in combination with a CT scan. This is called a PET/CT scan.
  • Bone marrow aspiration or biopsy. Bone marrow is found in the center of some bones. It’s where blood cells are made. A small amount of bone marrow fluid may be taken. This is called aspiration. Or solid bone marrow tissue may be taken. This is called a core biopsy. Bone marrow is usually taken from the hip bone. This test may be done to see if cancer cells have reached the bone marrow.
  • Tumor biopsy. A sample of the tumor is taken. It may be taken with a needle or by a surgical cut (incision). It is checked under a microscope for cancer cells. A biopsy is needed to diagnose sarcomas. 

After a diagnosis of Ewing sarcoma, your child may have other tests. These help the healthcare providers learn more about the cancer. They will show how much and how far the cancer has spread (metastasized) in your child's body. A stage grouping is then assigned.

Stage groupings can have a value of 1 to 4. They are written as Roman numerals I, II, III, and IV. The higher the number, the more advanced the cancer is. Letters and numbers can be used after the Roman numeral to give more details.

The stage of a cancer is one of the most important things to know when deciding how to treat the cancer. Be sure to ask your child's healthcare provider to explain the stage of your child's cancer to you in a way you can understand.

Treatment

Treatment will depend on the stage and other factors. The cancer can be treated with any of the below:

  • Surgery. Surgery may be done to remove the tumor. Modern surgery methods are often able to preserve an arm or leg so that it does not need to be amputated. This is known as limb-salvage or limb-sparing surgery. Surgery is usually followed by chemotherapy or radiation therapy.
  • Chemotherapy. These are medicines that kill cancer cells. They are usually given before surgery. They may also be given after surgery. Your child may have a port or catheter inserted in order to receive the medicines into a vein (IV). Chemotherapy is given in cycles with periods of rest.
  • Radiation therapy. These are high-energy X-rays or other types of radiation. Radiation is used to kill cancer cells or stop them from growing. It may be used when a tumor is hard to completely remove with surgery.
  • High-dose chemotherapy with a stem cell transplant. Young blood cells (stem cells) are taken from the child or from someone else. This is followed by a large amount of chemotherapy medicine. This causes damage to the bone marrow. After the chemotherapy, the stem cells are replaced. This treatment may be used when there is a high risk of cancer returning.
  • Supportive care. Treatment can cause side effects. Medicines and other treatments can be used for pain, fever, infection, and nausea and vomiting.
  • Clinical trials. Ask your child's healthcare provider if there are any treatments being tested that may work well for your child. 

With any cancer, how well a child is expected to recover (prognosis) varies. Keep in mind:

  • Getting medical treatment right away is important for the best prognosis. Cancer that has spread is harder to treat.
  • Ongoing follow-up care during and after treatment is needed.
  • New treatments are being tested to improve outcome and to lessen side effects.

For more information regarding pediatric ewing sarcoma services in St. Louis, please call 314.454.5437 or 800.678.5437 or email.

Complications

A child may have complications from the sarcoma or from treatment, such as:

  • Infection or bleeding from surgery
  • Loose or broken grafts or rods from limb-salvage surgery
  • Hair loss, mouth sores, nausea, vomiting, diarrhea, increased infections, easy bruising and bleeding, and feeling tired from chemotherapy
  • Burns, hair loss, nausea, diarrhea, poor bone growth, organ damage, and new cancers from radiation
  • Emotional and physical challenges from dealing with the tumor, surgery, or other needed treatments
  • Heart and lung problems
  • Problems with growth and development
  • Learning problems
  • Changes in sexual development
  • Problems with the ability to have children (fertility) in the future
  • Return of the cancer
  • Growth of other cancers

Living with

A child with a Ewing sarcoma needs ongoing care. Your child will be seen by oncologists and other healthcare providers to treat any late effects of treatment and to watch for signs or symptoms of the tumor returning. Your child will be checked with imaging tests and other tests. And your child may see other healthcare providers for problems from the tumor or from treatment. Your child may need therapy to help with movement and muscle strength. This may be done by physical and occupational therapists.

You can help your child manage his or her treatment in many ways. For example:

  • Your child may have trouble eating. A dietitian may be able to help.
  • Your child may be very tired. He or she will need to balance rest and activity. Encourage your child to get some exercise. This is good for overall health. And it may help to lessen tiredness.
  • Get emotional support for your child. Find a counselor or child support group can help.
  • Make sure your child attends all follow-up appointments.

When to Call a Healthcare Provider

Call the healthcare provider if your child has:

  • Symptoms that get worse
  • New symptoms
  • Side effects from treatment

Key Points

  • Ewing sarcoma is a rare group of cancers that usually occur in the bone, but can also occur in soft tissue. 
  • X-ray and other imaging tests may be used in diagnosing Ewing sarcoma. A biopsy is needed to make a definite diagnosis.
  • Ewing sarcoma is treated with chemotherapy followed by surgery and/or radiation therapy. High-dose chemotherapy and stem cell transplant may be used in some children.
  • Continuous follow-up care during and after treatment is necessary.
  • Many complications can occur from the cancer and from the treatment. The complications may be short- or long-term.

Next Steps

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

  • Know the reason for the visit and what you want to happen.
  • Before your visit, write down questions you want answered.
  • 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 for your child.
  • Know why a new medicine or treatment is prescribed and how it will help your child. Also know what the side effects are.
  • Ask if your child’s 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 your child does not take the medicine or have the test or procedure.
  • If your child has a follow-up appointment, write down the date, time, and purpose for that visit.
  • Know how you can contact your child’s provider after office hours. This is important if your child becomes ill and you have questions or need advice.

For more information regarding pediatric ewing sarcoma services in St. Louis, please call 314.454.5437 or 800.678.5437 or email.