Ewing’s sarcoma actually refers to a family of tumors found in bone and soft tissues. It is a cancer that can develop anywhere in your body, although it usually starts in one of your bones – most commonly one of the bones in your hip, upper arm or thigh.

  • Generally (87% of the time), this tumor will grow in the middle of one of your long bones or in the bones of your spine, ribs or pelvis.
  • Occasionally, Ewing’s can also develop outside of your bone and is referred to as extra-osseous.
  • Primitive neuroectodermal tumor (PNET) – also known as peripheral neuroepithelioma – is a related tumor in the Ewing’s sarcoma family.
  • A PNET in your chest wall is referred to as an Askin’s tumor.

(NOTE: Don’t get hung up on all these medical names unless you’re interested. If you just say you have a “Ewing’s sarcoma” you’ll be close enough.)

A Few Interesting Facts…

Ewing’s sarcoma is named after Dr James Ewing who described the tumor in the 1920’s. Ewing’s sarcoma accounts for about 2% of all teen cancers. Approximately 200 children in the United States will be diagnosed each year with this disease. However, Ewing’s sarcoma occurs most frequently in teenagers. Guys are at a slightly higher risk than girls and it is extremely rare in African Americans.

What’s the First Step?

If you had some of the common symptoms of Ewing’s – pain, stiffness, or tenderness in the bone – your doctor probably ordered x-rays and other tests plus a biopsy to see if there were any cancer cells. This is important to determine the level of your disease and decide the best treatment plan.

Levels of Ewing’s Sarcoma

Both Ewing’s sarcoma and PNET’s are described as:

  • Localized – in only one part of your body
  • Metastatic – spread to other parts of your body

The most common place for this cancer to spread to is your lungs, although these tumors can also spread to your other bones or your bone marrow. This is one of the biggest problems with Ewing’s sarcoma and other bone cancers. Most everyone with Ewing’s or PNET has micrometastatic disease (disease spread) that can’t always be seen on CT scans, bone scans or bone marrow tests. If your tumor is on your chest wall, you may have fluid around the lungs that also has cancerous cells.

So, Now What?

Your treatment plan will be determined by your medical team based on your specific diagnosis. Generally, it will look something like this:

  • You will be treated with chemotherapy for both your primary tumor as well as any metastasis (even if it doesn’t show up in your scans).
  • If the tumor is in an area that allows it to be removed without a problem (for example, on your femur), then you will have surgery.
  • After your tumor is removed, you may also be treated with radiation therapy.
  • If your tumor is in an area where surgery would cause significant cosmetic or functional impairment (for example, on your head), then you will receive radiation therapy for local control.

Moving Right Along…

Think of your medical team – your docs, nurses, specialists – as partners in your life for the next several months. Keep asking for all the information you need, so you know exactly what is going to happen. You will make better decisions about your care if you know what to expect. Since your type of tumor was identified, there has been great progress in treatment. The road ahead may be tough but you know what they say,

“When the going gets tough, the tough get going.”