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Ewing Sarcoma: Frequently Asked Questions

Ewing Sarcoma: Frequently Asked Questions

Here are some answers to frequently asked questions about Ewing sarcoma.

What is Ewing sarcoma?

Ewing sarcoma is a type of cancer that can start in either the bone or in nonbony, or soft, tissues. Ewing sarcoma is part of the Ewing family of tumors (EFT).Tumors in the soft tissue are called extraosseous. Another member of the EFT family is the peripheral primitive neuroectodermal tumor. These cancers are closely related. Doctors believe they come from the same type of cells and they are treated in a similar way.

Who gets Ewing sarcoma?

Most people who get Ewing sarcoma are between 10 and 20 years old. A small number of adults also get this cancer. More males get it than females, and more white people get it than black people. Only about 1% of all childhood cancers are Ewing sarcoma. Doctors are not sure why one person gets it and another does not.

What are the risk factors for Ewing sarcoma?

No lifestyle risk factors have been identified for Ewing sarcoma. Studies of children with this cancer have found no link between chemicals, radiation, or other exposure. Ewing sarcoma does not seem to run in families. The only known risk factors are age, gender, and race. 

What are the symptoms of Ewing sarcoma?

The symptoms of Ewing sarcoma depend on the person and the size and location of the tumor. The most common symptom is pain in the area of the tumor. There may also be a lump, which may or may not hurt. The lump may be very painful if it is near nerves or within the bone. Other symptoms may include fever, fatigue, and weight loss. These symptoms do not mean that you definitely have Ewing sarcoma. Other things could cause them. You should talk to your doctor if you are having any of these symptoms.

How is Ewing sarcoma diagnosed?

The doctor will ask questions about your health history and will do a physical exam to check for signs of cancer.

Photo of a young woman getting a scan.

 The doctor may order several of these tests to learn if there's cancer:

  • X-rays

  • CT scan

  • MRI

  • Positron emission tomography (PET) scan

  • Radionuclide bone scan

  • Biopsy of the tumor

  • Bone marrow aspiration and biopsy

Should everyone get a second opinion for Ewing sarcoma?

Many people with cancer get a second opinion from another doctor. There are many reasons to get one. Here are some of those reasons:

  • Not feeling comfortable with the treatment decision

  • Being diagnosed with a rare type of cancer

  • Having several options for how to treat the cancer

  • Not being able to see a cancer expert

Many people are not sure which Ewing sarcoma treatment would be best for them. It may help to have a second doctor review the diagnosis and treatment options before starting treatment. In most cases, a short delay in treatment will not lower the chance that it will work. Some health insurance companies even require that a person with cancer seek a second opinion, and will pay for a second opinion if asked.

How can someone get a second opinion for Ewing sarcoma?

These are some of the many ways to get a second opinion:

  • Ask a primary care doctor. He or she may be able to suggest a specialist. This may be a surgeon, medical oncologist, or radiation oncologist. Sometimes these doctors work together at cancer centers or hospitals.

  • Call the National Cancer Institute's Cancer Information Service. The number is 800-4-CANCER (800-422-6237). They have information about treatment facilities. These include cancer centers and other programs supported by the National Cancer Institute.

  • Seek other options. Check with a local medical society, a nearby hospital or medical school, or a support group to get names of doctors who can give you a second opinion. Or ask other people who've had cancer for their advice.

How is Ewing sarcoma treated?

Ewing sarcoma may be treated with surgery, radiation, or chemotherapy. A combination of these treatments is nearly always used.

What's new in Ewing sarcoma research?

Cancer research should give you hope. Doctors and researchers around the world are learning more about what causes Ewing's sarcoma. And they are finding better ways to detect and treat this cancer.

Scientists are working on new ways to diagnose the Ewing family of tumors. They are using special proteins to look for substances in Ewing tumors that are not found in any other kind of tumor.

They are also trying to understand the abnormal genes that cause Ewing sarcoma. Knowing more about these genes may help them develop new treatments that turn off or inactivate the damaged genes.

Studies are testing new chemotherapy drugs and high chemotherapy doses to see how they will work on people with Ewing sarcoma.

What should I know about clinical trials for Ewing sarcoma?

Clinical trials study new kinds of cancer treatments. Doctors use clinical trials to learn how well new treatments work and what their side effects are. Promising treatments are ones that work better or have fewer side effects than the current treatments. People who participate in these studies get to use treatments before the FDA approves them. People who join trials also help researchers learn more about cancer and help people who may develop cancer in the future.


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