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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.
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.
The symptoms of Ewing's sarcoma vary from person to person. Usually, the first symptom is pain where the tumor is located. The pain, which often gets worse at night or during exercise, may be from the tumor growing or a fracture in a bone that has been weakened by the tumor.
Other signs of Ewing's sarcoma include:
- Lump, swelling or tenderness at the tumor site
- Broken bone after a minor accident or normal activity
- Walking with a limp
- Weight loss
- Weakness, numbness or paralysis of arms and legs if tumor has spread near the spine
- Shortness of breath, if Ewing's sarcoma has spread to the lungs
These symptoms do not always mean your child has Ewing's sarcoma. Many of the signs are similar to normal minor problems many children have. However, it's a good idea to speak to your doctor, since these problems may signal other health issues.
An accurate and comprehensive diagnosis of Ewing’s sarcoma is essential to successful treatment. At MD Anderson’s Children’s Cancer Hospital, our specialized pediatric sarcoma team – including dedicated surgeons, oncologists and pathologists – has incredible expertise and experience in pinpointing this type of cancer in children.
A definitive diagnosis of Ewing’s sarcoma begins with a biopsy of the tumor. If at all possible, this first biopsy should be at the cancer center where your child will receive treatment.
If your child has symptoms that may signal Ewing’s sarcoma, the doctor will examine your child and ask you questions about your child’s health and your family medical history.
One or more of the following diagnostic tests may be done to find out if your child has Ewing’s sarcoma and if it has spread. They also may be done to find out if treatment is helping.
Biopsy: A biopsy, which removes a tiny piece of bone or soft tissue, is always needed to diagnose Ewing’s sarcoma. This is the only way to find out for certain if the tumor is cancer or another bone or soft tissue disease. It is very important for the biopsy to be done by someone with experience in diagnosing and treating Ewing’s sarcoma.
There are two types of bone biopsy:
- Needle biopsy: A large, hollow needle is inserted through the skin to the area of bone or soft tissue to be tested. The needle removes a cylindrical sample of tissue to look at under a microscope. CT (computed tomography) scans may be used to help guide the needle.
- Open or surgical biopsy: An incision (cut) is made, and the surgeon removes a tiny piece of the tumor to examine with a microscope. Rarely, the entire tumor may be removed.
Your child’s doctor will decide which type of biopsy is best based on several factors, including the type and location of the tumor. If possible, the surgeon who performs the biopsy should do the surgery to remove the cancer.
Imaging tests may be used before or after biopsy to pinpoint the location of the tumor and find out if it has spread. They may include:
- CT or CAT (computed axial tomography) scans
- MRI (magnetic resonance imaging) scans
- PET (positron emission tomography) scans
- Bone scan
Bone marrow aspiration and biopsy
Getting a second opinion at MD Anderson
The experts at Children’s Cancer Hospital are highly specialized in diagnosing and staging Ewing’s sarcoma. We welcome the opportunity to provide second opinions.
If you would like to get a second opinion at MD Anderson, call 866-348-3095 to make an appointment or request an appointment online.
The experts at MD Anderson's Children's Cancer Hospital take the extra time and effort to personalize treatment for each child with Ewing's sarcoma. A highly specialized team of some of the world's top physicians follows your child throughout treatment, ensuring the best chance of successful treatment with the least impact on your child's growing body.
Ewing's sarcoma is rare, and most oncologists have little experience treating it. Studies show that sarcoma patients have better outcomes when they are treated at large, comprehensive cancer centers. Our physicians treat a large number of patients with Ewing's sarcoma, which translates to a remarkable level of skill and expertise.
Since Ewing's sarcoma usually requires multiple approaches, a comprehensive team approach is crucial. At the Children's Cancer Hospital, your child is the focus of a group of physicians, including surgeons, oncologists, radiation oncologists and pathologists. They are supported by specially trained rehabilitation specialists, therapists, nurses and other health care professionals who work together to ensure your child receives the best care.
Ewing's sarcoma treatment often includes surgery. Our surgeons are among the nation's most skilled. They use the most up-to-date techniques and technologies, including limb-sparing surgeries, so most patients can avoid the loss of an arm or leg. If limb-sparing surgery is not an option, Children's Cancer Center offers the most-advanced prostheses.
Many Ewing's sarcoma patients at Children's Cancer Hospital are treated with innovative agents as part of clinical trials. We participate in Children's Oncology Group protocols, as well as other clinical trials available at only a few hospitals in the nation.
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.
Our Ewing's sarcoma treatments
If your child is diagnosed with Ewing's sarcoma, the doctor will talk to your family about the best options to treat it. This depends on several factors, including the size and location of the cancer, if it has spread, and your child's age and general health.
At Children's Cancer Hospital, we design a course of treatment customized specially for your child's needs. One or more of the following therapies may be recommended to treat the cancer or help relieve symptoms.
In most Ewing's sarcoma cases, small areas of cancer have spread to other parts of the body. They are called micrometastases. These areas usually do not show up in imaging tests.
For that reason chemotherapy, which travels to all parts of the body, is almost always the first part of the treatment for Ewing's sarcoma. Usually, it is followed by surgery and/or radiation therapy and further chemotherapy. Children's Cancer Hospital offers the most up-to-date and advanced chemotherapy options.
Children's Cancer Hospital is leading into the future of cancer treatment by developing innovative targeted therapies. These agents are specially designed to treat each cancer's specific genetic/molecular profile to help the body fight the disease. Many of the doctors who treat Ewing's sarcoma at Children's Cancer Hospital are dedicated researchers who have pioneered and actively lead national and international clinical trials with novel targeted agents.
Because Ewing's sarcoma can be found in a number of places throughout the body, several types of surgery may be used to treat it. Your doctor will talk to you about the best type of surgery for your child's particular needs and possible side effects.
Surgery to treat Ewing's sarcoma attempts to remove as much of the tumor as possible without harming surrounding areas.
At Children's Cancer Hospital, our specialized orthopedic surgeons are often able to avoid amputation when the tumor is in an arm or leg. Complex limb-sparing surgery removes the tumor, but saves the tendons, nerves and blood vessels. Any bone that is removed is replaced with a bone graft or an internal prosthesis, which is similar to an artificial joint.
Like all surgeries, Ewing's sarcoma surgery is most successful when performed by a specialist with a great deal of experience in the particular procedure. Children's Cancer Hospital surgeons are some of the most skilled and recognized in the world. They are among the few surgeons in the world who specialize in pediatric sarcoma treatment, and they use the least-invasive and most-advanced techniques designed especially for children.
Radiation therapy (also called radiotherapy) uses high-energy beams to destroy cancer cells. New radiation therapy techniques and remarkable skill allow Children's Cancer Hospital doctors to target tumors more precisely, delivering the maximum amount of radiation with the least damage to healthy cells. This is particularly important to growing bodies.
Children's Cancer Hospital provides the most-advanced radiation treatments, including:
- 3D-conformal radiation therapy
- Intensity-modulated radiotherapy
Proton therapy delivers high radiation doses directly into the tumor, sparing nearby healthy tissue and vital organs. For many patients, this results in better cancer control with less impact on the body.
The Proton Therapy Center at MD Anderson is one of the world's largest and most advanced centers. It's the only proton therapy facility in the country located within a comprehensive cancer center. This means this cutting-edge therapy is backed by all the expertise and compassionate care for which MD Anderson is famous.
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.