Ewing Sarcoma - Childhood and Adolescence: Follow-Up Care

Approved by the Cancer.Net Editorial Board, 09/2020

ON THIS PAGE: You will read about medical care after cancer treatment is completed and why this follow-up care is important. Use the menu to see other pages.

Care for people diagnosed with cancer does not end when active treatment has finished. The health care team will continue to check that the cancer has not come back, manage any side effects, and monitor your child’s overall health. This is called follow-up care. Everyone treated for cancer, including Ewing sarcoma, should have life-long, follow-up care by a doctor or health care team familiar with the late effects of chemotherapy and radiation therapy.

This follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your child's recovery in the months and years ahead. Based on the type of treatment your child received, the doctor will determine what examinations and tests are needed to check for long-term side effects and the possibility of secondary cancers. Follow-up care for Ewing sarcoma usually includes bone scans, CT scans, MRI scans, and x-rays. The doctor can recommend which screening tests are necessary and how often they should be done.

Cancer rehabilitation may be recommended, and this could mean any of a wide range of services such as physical therapy, family or individual counseling, nutritional planning, and/or educational assistance. The goal of rehabilitation is to help survivors and their families regain control over many aspects of their lives and remain as independent and productive as possible. Learn more about cancer rehabilitation.

Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence, which means that the cancer has come back. Cancer recurs because small areas of cancer cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms.

During follow-up care, a doctor familiar with your child’s medical history can give you personalized information about the risk of recurrence. The doctor will ask specific questions about your child's health. Some people may have blood tests or imaging tests done as part of regular follow-up care, but testing recommendations depend on several factors, including the type and stage of cancer first diagnosed and the types of treatment given.

The anticipation before having a follow-up test or waiting for test results can add stress to you or a family member. This is sometimes called “scan-xiety.” Learn more about how to cope with this type of stress.

Managing long-term and late side effects of Ewing sarcoma

Sometimes, side effects may linger beyond the active treatment period. These are called long-term side effects. In addition, other side effects called late effects may develop months or even years afterwards. Late effects can occur almost anywhere in the body. They include physical problems, such as heart and lung problems and second cancers, which is a new cancer that happens in someone who has had cancer before. They also include emotional problems, such as anxiety and depression, and problems with memory, thinking, attention, and learning. People treated for Ewing sarcoma have a higher risk of developing later problems, such as leukemias and solid tumors.

Based on the type of treatment the person with cancer received, the doctor will recommend what examinations and tests are needed to check for late effects. Children and young adults who received chemotherapy will need to be monitored for potential problems with their sexual development and fertility (ability to have children). Other late effects may include delayed or stunted body growth and delayed or missed developmental milestones. Your child may be referred to an endocrinologist, a doctor who specializes in problems with glands and the endocrine system, to identify and manage these late effects. Follow-up care should also address quality of life, including any developmental or emotional concerns.

The Children's Oncology Group (COG) has studied both the physical and psychological effects that cancer survivors from this age group face. Based on these studies, COG has created recommendations for long-term follow-up care for childhood, adolescent, and young adult cancer survivors that can be found on a separate website: www.survivorshipguidelines.org.

Keeping a child's personal health records

You are encouraged to organize and keep a personal record of your child’s medical information. The doctor will help you create this. That way, as your child enters adulthood, they have a clear, written history of the diagnosis, the treatments, and the doctor’s recommendations about the schedule for follow-up care. ASCO offers forms to help keep track of the cancer treatment your child received and develop a survivorship care plan when treatment is completed.

Some children or young adults continue to see their oncologist, while others transition back to the general care of their family doctor or another health care professional. This decision depends on several factors, including the type and stage of cancer, side effects, health insurance rules, and your family’s personal preferences. Talk with the health care team about your child’s ongoing medical care and any concerns you have about their future health.

If a doctor who was not directly involved in your child’s cancer care will lead the follow-up care, be sure to share the cancer treatment summary and survivorship care plan forms with them and with all future health care providers. Details about the specific cancer treatment given are very valuable to the health care professionals who will care for the person with cancer throughout their lifetime.

The next section in this guide is SurvivorshipIt describes how to cope with challenges in everyday life after a cancer diagnosis. Use the menu to choose a different section to read in this guide.