Following treatment for a Ewing tumor, the main concerns for most families are the immediate and long-term effects of the tumor and its treatment, and concerns about the possibility of the tumor coming back.

It is certainly normal to want to put the tumor and its treatment behind you and to get back to your normal life. But it's important to realize that follow-up care is a central part of this process that offers your child the best chance for recovery and long-term survival.

Follow-up visits and tests

Once treatment is finished, the health care team will discuss a follow-up schedule with you, including which tests should be done and how often. Doctor visits and tests to look for signs that the cancer has come back are done more frequently at first. If nothing abnormal is found, the time between tests can then be extended.

Physical exams, x-rays, and other imaging tests (CT, MRI, PET, and/or bone scans) are often done about every 2 to 3 months for the first 2 years following treatment, and then less often during the following years.

Your child's doctors will also continue to watch for signs of side effects from treatment. Measurements of growth and blood tests may be done. Because the chemotherapy drug doxorubicin (Adriamycin) may affect the heart, tests to measure heart function (such as echocardiograms) will probably be done as well.

During this time, it is very important to report any new symptoms to the doctor right away so that any problems can be found early, when they can be treated most effectively.

Possible long-term effects of cancer treatment

More children treated for cancer are now surviving into adulthood. With childhood cancer survivors living longer, in recent years more attention has been focused on their adult health status. Researchers have learned that childhood cancer treatment may affect that child's health later in life.

Just as the treatment of childhood cancer requires a very specialized approach, so does aftercare and monitoring for any late effects of treatment. Careful follow-up allows for early recognition of and attention to the after-effects of treatment.

Childhood cancer survivors are at risk, to some degree, for several possible late effects of their cancer treatment. This risk depends on a number of factors, such as the size and location of the cancer, the specific cancer treatments received, dosages of cancer treatment, and the child's age at the time of treatment. For example, the after-effects of surgery for Ewing tumors may range from small scars to the loss of a limb, which would require both physical rehabilitation and emotional adjustment.

Other late effects of cancer treatment can include:

• heart or lung problems (due to certain chemotherapy drugs or radiation therapy)
• slowed or decreased growth and development (in the bones or overall)
• changes in sexual development and ability to have children
• changes in intellectual function with learning problems
• development of second cancers (see below)

It is very important to discuss possible long-term complications with your child's health care team, and to make sure there is a plan in place to watch for these problems and treat them, if needed. For more information on these and other possible late effects, please see our document, Childhood Cancer: Late Effects of Cancer Treatment.

Second cancers: Children who are cured of their original cancers may be at higher risk for other cancers later in life. Some chemotherapy drugs used to treat Ewing tumors can cause leukemia in a small fraction of children later on. This usually occurs within 5 years after treatment. Another concern in those treated for Ewing tumors is the development of a new cancer (usually another type of bone cancer) at the site of radiation therapy. These typically begin to develop about 5 years after radiation, and the risk remains higher for many years. Doctors are studying ways to reduce these risks while maintaining the effectiveness of current treatments.

Keeping good medical records

As much as you may want to put the experience behind you once treatment is completed, it is very important to keep good records of your child's medical care during this time. Eventually, your child will grow up, be on his or her own, and have new doctors. It is important that he or she be able to give the new doctors the exact details of the cancer diagnosis and treatment. Gathering the details soon after treatment may be easier than trying to get them at some point in the future. There are certain pieces of information that your child's doctors should have, even into adulthood. These include:

• a copy of the pathology report from any biopsies or surgeries
• if there was surgery, a copy of the operative report
• if there were hospitalizations, copies of the discharge summaries that doctors prepare when patients are sent home
• if there was chemotherapy treatment for the cancer, a list of the drugs, drug doses, and when they were given
• if there was radiation, a summary of the type and dose of radiation and when and where it was given

Last Medical Review: 08/20/2009
Last Revised: 08/20/2009