At Dana-Farber/Boston Children's Cancer and Blood Disorders Center, our multidisciplinary approach to care ensures in-depth discussion of each case and personalized treatment plans for every patient. Through our Bone and Soft Tissue Program, we integrate expertise from:
- pediatric oncologists, surgical oncologists and radiation oncologists
- pediatric experts from all other medical subspecialties
- highly skilled and experienced pediatric oncology nurses
- Child Life specialists, psychologists, social workers and resource specialists who provide supportive care for your child before, during and after treatment
In addition, our cancer center offers the following services:
- Expert diagnosis by pathologists, using advanced molecular diagnostic testing to identify your child's type of tumor. Knowing the molecular composition of a tumor helps predict which treatments are more likely to work.
- Access to unique Phase I clinical trials, from our own investigators and from the Children's Oncology Group.
- Expert surgical care from experienced pediatric surgeons, several of whom developed approaches used at centers across the country.
- Support services to address all of your child and family's needs.
Where will my child be treated if we come to Dana-Farber/Boston Children's?
Children treated through Dana-Farber/Boston Children's Cancer and Blood Disorders Center receive outpatient care at the Jimmy Fund Clinic on the third floor of the Dana-Farber Cancer Institute. If your child needs to be admitted to the hospital, she will stay at Boston Children's Hospital on the ninth floor of the Berthiaume Building. Learn more about our shared pediatric cancer facilities.
We know how difficult a diagnosis of Ewing sarcoma can be, both for your child and for your whole family. That's why our clinicians are focused on family-centered care: From your first visit, you'll work with a team of professionals who are committed to supporting all of your child's – and your family's – medical and emotional needs.
If your child has been diagnosed with Ewing sarcoma, you'll naturally be eager to know how his team plans to treat the tumor. The treatment team will determine a specific course of therapy based on several factors, including:
- your child's age, overall health and medical history
- the type, location and size of the tumor
- the extent of the disease (whether it has metastasized, or spread, and if so, how much and how far)
- how your child's doctors expect the disease to progress
- your child's tolerance for specific medications, procedures or therapies
- your family's preferences for treatment
There are a number of treatments we may recommend. Some of them help to treat the tumor itself, while others are intended to address complications of the disease or potential side effects of treatment.
Most of the time, there are two components in treating children with Ewing sarcoma: local control – treating the tumor itself, usually through surgery, radiation or both – and systemic therapy – preventing the tumor from spreading, usually through chemotherapy.
Unfortunately, Ewing sarcoma has a high likelihood of metastasizing (spreading), so local control alone is only effective in about 20 percent of all cases. This means systemic therapy is key.
At Dana-Farber/Boston Children's, treatment for Ewing sarcoma almost always starts with chemotherapy. Chemotherapy is systemic treatment, meaning it is introduced to the bloodstream and travels throughout the whole body to kill cancer cells.
Chemotherapy drugs interfere with cancer cells' ability to grow or reproduce. They're usually given for several cycles before surgery or radiation to help shrink the size of the tumor and prevent the cancer from spreading to other parts of the body.
Chemotherapy can be given:
- as a pill to swallow
- intravenously (through a vein), going directly to the bloodstream (this is also called IV)
Most children with Ewing sarcoma respond very well to chemotherapy.
- A combination of chemotherapy drugs is usually used.
- Chemotherapy is usually given over a period of a few days every two weeks.
- Chemotherapy for Ewing sarcoma is typically given for two to three months before trying surgery, radiation or both. After surgery or radiation, chemotherapy is continued for another 6 months in order to eliminate all the cancerous cells in the body.
Depending on your child's tumor, interval compression – a way of giving chemotherapy more intensely, every two weeks instead of three – may be recommended. Studies show that interval compression improves outcomes for children with Ewing sarcoma.
While chemotherapy can be quite effective in treating certain cancers, the drugs cannot differentiate normal healthy cells from cancer cells. As a result, there can be many adverse side effects during treatment. Being able to anticipate these side effects can help the care team, child and family prepare (and, in some cases, prevent) these complications from occurring, if at all possible.
After some chemotherapy cycles have been given, surgery may be performed to remove the remaining parts of the tumor.
- involves the removal of part or all of an arm or leg
- performed only if a pressing reason exists not to save the limb
- may be necessary if your child has a large tumor, or when the cancer has spread to surrounding essential nerves, blood vessels or muscles that cannot be removed
During amputation, surgeons take the remaining muscles and skin and form a “cuff” around the amputated bone. The cuff is made so that it can later fit snugly into an artificial limb.
Whenever possible, surgeons avoid amputation by removing only the cancerous section of the bone and replacing it with an artificial device, which is called an endoprosthesis.
Although amputation of a limb is sometimes necessary, chemotherapy before and after surgery has made limb-salvage surgery possible in most cases. During this surgery:
- surgeons try to remove all the cancer, but still leave the limb in working order
- the tumor and a portion of tissue around the tumor's edge are removed
- the removed bone is replaced with either a bone graft or an endoprosthesis
- A bone graft can be bone taken from elsewhere in your child's body, or bone donated by another person. The bone is shaped to fit the gap left by the removed portion.
- An endoprosthesis is an artificial support made of metal or other materials that take the place of bone inside the child's body.
Children with Ewing sarcoma occurring in a location where surgical removal is difficult will receive radiation therapy instead of surgery. Some children need both surgery and radiation therapy. Radiation is used to either shrink the tumor or to destroy it completely.
- The good news is that Ewing sarcoma is very sensitive to radiation therapy: It has a 75- to 80-percent cure rate.
- Here at Dana-Farber/Boston Children's, we use precisely targeted and dosed radiation to kill any cancer cells left behind after your child's surgery.
In some cases, we may use proton beam therapy, which delivers radiation to a more targeted area than standard radiation (which is delivered with X-rays).
- Proton beam therapy spares more of the surrounding healthy tissue and organs, and causes fewer side effects for patients.
- The location and size of the tumor determines whether proton beam therapy is possible. If the tumor area is too large, the protons won't be effective. Tumors in well-confined areas respond best.
What will my child need after treatment?
Your child may need physical therapy after surgery to help him restore strength and function in the affected limb. If his leg was affected, he may need crutches for some part of the two to three months of healing time.
Are stem cell transplants/bone marrow transplants an option for treating Ewing sarcoma?
Stem cell transplants are more applicable to treating leukemias than to solid tumors like Ewing sarcoma.
However, autologous bone marrow transplants might play a helpful role for some children with Ewing sarcoma. In this treatment approach:
- The child's bone marrow is frozen before she starts chemotherapy.
- A standard chemotherapy regimen begins.
- Doctors incorporate “megatherapy” – giving the child a very high dose of chemotherapy before rejuvenating her body by re-transplanting her own bone marrow.
This approach seems to be effective in some children with Ewing sarcoma that has metastasized or relapsed, but the data is not conclusive. In short, it's a potentially promising treatment method but it still needs to be fully explored by researchers.
Side effects and complications
What are the possible side effects and complications of treatment for Ewing sarcoma?
Like any type of cancer, Ewing sarcoma carries a range of possible long-term complications:
Bones in the area where the tumor was may break easily, after only mild bumps or falls, because they have been weakened. This is called a pathologic fracture.
Children may develop osteomyelitis, an inflammation caused by infection in the bone.
Systemic complications caused by chemotherapy and/or radiation
- Radiation often causes inflammation of the surrounding tissues.
- Chemotherapy drugs can cause leukemia. Unfortunately, Ewing sarcoma is – along with Hodgkin lymphoma – the childhood cancer most likely to lead to this type of leukemia.
- Some children develop cardiomyopathy after undergoing chemotherapy.
- Chemotherapy can also cause fatigue, diarrhea, constipation and headaches.
- Kidney damage is also possible.
- All chemotherapy drugs increase the chance that a person will experience infertility later in life.
How are these side effects and complications managed?
All kids who have been treated for cancer require ongoing, specialized care to monitor for signs that their cancer may have returned, and to manage any side effects of treatment.
Here at Dana-Farber/Children's Hospital Cancer Center, children usually return to us for care for several years after their initial cancer treatment. One of our major goals is to maximize your child's long-term health. We do this in many ways, including assessing and attending to his:
- intellectual function and school performance
- endocrine functions
- neurological development
- mental and behavioral health
We have special survivorship clinics to provide follow-up care for patients who have been treated for pediatric cancers.
In addition, we also offer complementary or alternative medicines as additions to (but not replacements for) standard medical and surgical treatment. These therapies, which may help control pain and side effects from surgery, chemotherapy and radiation, include:
- therapeutic touch
- special dietary recommendations
Talk to your child's physician about whether complementary or alternative medicine might be a good supplement to your child's treatment plan.
Long-term monitoring and follow-up
What long-term care will my child need?
Because Ewing sarcoma does have a tendency to recur later in life – even as many as 10 years after treatment – long-term follow-up care is essential.
Here at Dana-Farber/Boston Children's, we see patients with Ewing sarcoma for x-rays or MRI of the primary tumor site and CT scan of the chest every three months after treatment is completed. If all goes well, the frequency of the visits will decrease for the next five years.
One of our major goals is to maximize your child's long-term health. We do this in many ways, including optimizing your child's:
- intellectual function and school performance
- endocrine functions
- neurologic functions
- psychosocial well-being
To monitor for recurrence and address short and long-term side effects of treatment, children treated for pediatric cancer receive follow-up care at our survivorship clinics.
To assist the many children successfully treated for malignant tumors, we have established multidisciplinary survivorship clinics that address the medical, psychological and social consequences of a cancer diagnosis and subsequent treatments. Childhood cancer survivors of any age are invited to visit our clinics.
Coping and support
We understand that a cancer diagnosis is an event that affects the entire family. In addition to providing exceptional medical care, the Dana-Farber/Boston Children's team also strives to meet all of your family's emotional and quality-of-life needs.
Our patient and family support services can help address many of your needs and concerns.
In addition, Boston Children's Hospital offers the following for parents and families:
- Children's Center for Families is dedicated to helping families locate the information and resources they need to better understand their child's particular condition and take part in their care. All patients, families and health professionals are welcome to use the center's services at no extra cost. The Center for Families is open Monday through Friday from 8 a.m. to 7 p.m., and on Saturdays from 9 a.m. to 1 p.m. Please call 617-355-6279 for more information.
- For children and families affected by life-threatening illness, our Pediatric Advanced Care Team (PACT) is available to provide supportive treatments intended to optimize the quality of life and promote healing and comfort. In addition, PACT can provide emotional support and help arrange end-of-life care when necessary. Please call 617-632-5042 for more information.
- Children's Behavioral Medicine Clinic helps children who are being treated on an outpatient basis at the hospital—as well as their families—understand and cope with their feelings about:
- being sick
- facing uncomfortable procedures
- handling pain
- taking medication
- preparing for surgery
- changes in friendships and family relationships
- managing school while dealing with an illness
- The Experience Journal was designed by Children's psychiatrist-in-chief, David DeMaso, MD, and members of his team. This online collection features thoughts, reflections and advice from kids and caregivers about living with a variety of medical conditions, the “befores” and “afters” of surgery and going through many other medical experiences.
- Children's Psychiatry Consultation Service provides several services, including:
- short-term therapy for children admitted to one of the hospital's inpatient units
- parent and sibling consultations
- teaching healthy coping skills for the whole family
- educating members of the medical treatment team about the relationship between physical illness and psychological distress
- Children's Department of Psychiatry offers a free booklet, “Helping Your Child with Medical Experiences: A Practical Parent Guide.” (Adobe Acrobat required to view and download) Topics in the booklet include:
- talking to your child about her condition
- preparing for surgery and hospitalization
- supporting siblings
- taking care of yourself during your child's illness
- adjusting to life after treatment
- The Children's chaplaincy is a source of spiritual support for parents and family members. Our program includes nearly a dozen clergy members—representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions—who will listen to you, pray with you and help you observe your own faith practices during your child's treatment.
- Children's International Center is a resource for patients and families from countries outside the United States. The center can provide assistance with everything from reviewing medical records to setting up appointments and locating lodging. Contact the center by phone at 01-617-355-5209 or via e-mail at firstname.lastname@example.org.
| Did you know?
| Children's has an Integrative Therapies Team, offering services like therapeutic touch, massage therapy, Reiki and more.
Please note that neither the Dana-Farber/Boston Children's Cancer and Blood Disorders Center nor the Children's Department of Orthopedic Surgery unreservedly endorses all of the information found at the sites listed below. These links are provided as a resource.
Helpful links for parents and families
Helpful links for teens