What happens after treatment for Ewing tumors?

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 a life that doesn't revolve around cancer. 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. It is very important to go to all follow-up appointments. Follow-up is needed to check for cancer recurrence, as well as possible side effects of certain treatments. Doctor visits and tests 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. When Ewing tumors come back, it is usually within the first 2 years after treatment, but they can sometimes come back even many years later, so continued follow-up is important.

Your child's doctors will also continue to watch for signs of side effects from treatment and monitor physical rehabilitation after treatment. Measurements of growth and blood tests may be done. The chemotherapy drug doxorubicin (Adriamycin) may affect the heart, so 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 young people treated for cancer are now surviving into adulthood. Doctors have learned that the treatment may affect children's health later in life, so watching for health effects as they get older has become more of a concern in recent years.

Treating cancer in young people requires a very specialized approach and so does the care and follow-up after treatment. The earlier any problems can be recognized, the more likely it is they can be treated effectively.

Young people with cancer 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, doses of cancer treatment, and the patient'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 (see below)
• Learning problems
• Development of second cancers (see below)

Infertility: Infertility is not a common side effect of treatment for Ewing tumors, but it can occur. Young women may have changes in menstrual periods during chemotherapy, but normal monthly cycles usually return after treatment ends. Boys and men may lose the ability to make sperm. This usually returns, but the sperm count may remain low. Radiation to the pelvis may also affect fertility.

Talk to your cancer care team about the risks of infertility with treatment, and ask if there are options for preserving fertility, such as sperm banking. For more information, see our document called Fertility and Cancer: What Are My Options?

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 with radiation therapy for Ewing tumors is the development of a new cancer (usually another type of bone cancer) at the site of treatment. 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.

Long-term follow-up care for children

To help increase awareness of late effects and improve follow-up care of childhood cancer survivors throughout their lives, the Children's Oncology Group (COG) has developed long-term follow-up guidelines for survivors of childhood cancers. These guidelines can help you know what to watch for, what type of screening tests should be done to look for problems, and how late effects may be treated.

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. To learn more, ask your child's doctors about the COG survivor guidelines. You can also download them for free at the CureSearch Web site: www.survivorshipguidelines.org. The guidelines are written for health care professionals. Patient versions of some of the guidelines available (as "Health Links") on the site as well, but we urge you to review them with a doctor.

For more about some of the possible long-term effects of treatment, see our document called Children Diagnosed With Cancer: Late Effects of Cancer Treatment.

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. Gathering these details soon after treatment may be easier than trying to get them at some point in the future. This can be very helpful later on if you (or your child) change doctors. Be sure the doctors have the following information:

• A copy of the pathology report(s) from any biopsies or surgeries
• If there was surgery, a copy of the operative report(s)
• If you (your child) stayed in the hospital, copies of the discharge summaries that doctors prepare when patients are sent home
• If chemotherapy was given, a list of the drugs, drug doses, and when they were given
• If radiation therapy was given, a summary of the type and dose of radiation and when and where it was given

It is also very important to keep your health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of the tumor coming back, this could happen.