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According to the American Cancer Society, about 225 children and teens are diagnosed annually with the disease in North America. They account for about 1 percent of pediatric cancers.
Researchers have found that Ewing's sarcomas are caused by genetic changes that happen after birth. However, it is not known why some people develop the disease. It is not passed down in families.
About two-thirds of Ewing's sarcoma patients become long-term survivors of the disease.
Ewing's sarcoma types
Ewing's sarcomas are categorized into three types. While each type is slightly different, they all are caused by the same gene abnormalities and are treated in the same way.
- Ewing's sarcoma of the bone: This is the most common type of Ewing's sarcoma.
- Extraosseous Ewing tumor (EOE): These tumors form in soft tissues around bones.
- Peripheral primitive neuroectodermal tumor (PPNET): An extremely rare type of cancer, these tumors share certain characteristics with Ewing's sarcoma of the bone and EOE.
If your child has been diagnosed with Ewing's sarcoma, we're here to help. Call 866-348-3095 to make an appointment or request an appointment online.
Ewing's sarcoma risk factors
Although the exact cause of Ewing's sarcoma is not known, certain things seem to put people at higher risk of developing the disease.
- Gender: More males that females develop Ewing's sarcoma.
- Race: Children who are white (non-Hispanic or Hispanic) are at higher risk. Ewing's sarcoma is very rare in other races.
- Age: Ewing's sarcoma usually develops in teenagers.
Learn more about Ewing's sarcoma:
In rare cases, Ewing's sarcoma can be passed down from one generation to the next. Genetic counseling may be right for you. Visit our genetic testing page to learn more.
Why choose MD Anderson for Ewing's sarcoma care?
At MD Anderson's Children's Cancer Hospital, each child with Ewing's sarcoma has a team of highly specialized experts who customize your child's treatment to ensure the most effective therapy with the least impact on the body – now and in the future.
Ewing's sarcoma is rare, and many doctors have little experience with treating it. Our physicians are among the world's most highly trained and experienced in treating Ewing's. This can translate into a better outcome in many cases.
Diagnosis and treatment
Accurate diagnosis of Ewing's sarcoma can be challenging, but it is essential to successful treatment. Our pathologists are dedicated to sarcoma, and they use the latest, most-sophisticated tests to pinpoint the type and extent of the cancer.
Ewing's sarcoma often requires a multi-therapy approach. Using the latest advances in complex limb-sparing surgeries, our surgeons are often able to avoid amputation if the cancer is in an arm or leg. If amputation is needed, we offer specialized rehabilitation.
Many children with Ewing's sarcoma are treated with clinical trials. We participate in trials of the Children's Oncology Group and offer other innovative therapies available at only a few hospitals in the nation. Our researchers have helped make many advances, including using drug combinations to treat Ewing's sarcoma.
Our Osteosarcoma and Ewing's Sarcoma Center coordinates care and streamlines and speeds access to clinical trials. In addition, sarcoma researchers work with physicians to translate laboratory research into new clinical trials, which are especially beneficial for patients with relapsed or refractorysarcoma.
Children's Cancer Hospital is designed just for children, with a full range of services and amenities that help make the child and family's experience as comfortable as possible. We go beyond medical care to deliver a comprehensive experience that treats the whole child. And at Children's Cancer Hospital, you're surrounded by the strength of one of the nation's top cancer centers.
If your child has been diagnosed with Ewing's sarcoma, we're here to help. Call 877-632-6789 to make an appointment or request an appointment online.
I can body surf, bike and hike and still enjoy those things. On stage, I can still play music and jam with my friends. It’s awesome.
I’ve always been good at math and science, so I’d given some thought to becoming a doctor, even as a teenager. Then cancer came along, and I got to see a lot of the inner workings of the medical field.
I was hooked. Medicine seemed like a great avenue for my talents and passions. And I wanted to give back and be part of the community that saved my life.
My Ewing’s sarcoma diagnosis
I was 17 years old when I found out I had cancer. One day in May 2009, I woke up with shooting pains in my right arm. Since I was the pitcher on my high school baseball team, I got it checked out by a sports orthopedist. He assumed it was tendonitis and gave me some anti-inflammatory medication.
The pain didn’t subside, so I got an X-ray. The doctor saw a shadow on my bone and ordered an MRI. We had an orthopedic surgeon look at those images, too. He ordered a biopsy. The results showed I had Ewing's sarcoma, a type of bone and soft tissue cancer.
‘Unparalleled’ experience at MD Anderson
My treatment consisted of 14 rounds of chemotherapy, with surgery smack dab in the middle. I had my chemo infusions at a local children’s hospital, but when it came time to have surgery, I wanted a second opinion.
I liked my surgeon, but I wasn’t really confident in his level of experience. So, I got some referrals and asked a lot of questions. Ultimately, I chose Valerae Lewis, M.D., at MD Anderson, because her experience is unparalleled. She’d done the operation I needed several times before and was very confident. And her confidence made us confident.
Maintaining functionality after surgery
My surgery took place at MD Anderson in August 2009. Dr. Lewis took all of my right radius out, except for a little stub down by my hand. Then, she recreated my wrist. Afterwards, I had seven more rounds of chemo, and I’ve been cancer-free ever since.
The radius is the bone on the thumb side of your forearm that allows you to rotate your wrist. So I can’t rotate my right wrist anymore, but I can still write and do everything else I need to do — including my 2013 ride in the Texas 4000, a 70-day, 4,000-mile charity bike ride that raises money to fight cancer.
I’m naturally right-handed, so maintaining functionality in that arm was important to me. Especially now that I’m in my third year of medical school.
A career in pediatric oncology?
The third year of medical school is when you start applying to residency programs, so I’ll need to choose my specialty soon. Right now I’m still deciding, but something about hematology and pediatric oncology keeps grabbing me and pulling me back.
Dr. Lewis teases me every year when I see her for my checkup. She asks if I’m going to be a surgeon because, as she says, “Surgeons are the best!” And every year, I break her heart a little bit because being a surgeon is just not my style.
But this is how everything goes between me and Dr. Lewis: When I was looking at colleges, she encouraged me to leave Texas and see more of the world. Instead, I went to The University of Texas at Austin. She gave me the same advice when I was looking at medical schools. But I ended up staying here in Houston, and now I’m at MD Anderson, doing my clinical rotation in pediatric hematology and oncology.
Above all else, Dr. Lewis told me not to go into pediatrics. But based on how things have gone up until now, I think we all know how that’s going to turn out.
Request an appointment at MD Anderson online or by calling 1-877-632-6789.