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Care for children or teens diagnosed with cancer doesn’t end when active treatment has finished. The health care team will continue to check to make sure the cancer has not returned, manage any side effects, and monitor the patient’s overall health. This is called follow-up care. All children or teens 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 usually includes bone scans, CT scans, MRI scans, and x-rays. The doctor can recommend the necessary screening tests.
Learn more about the importance of follow-up care.
Watching for recurrence
One goal of follow-up care is to check for a recurrence. 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. Your doctor will also ask specific questions about the patient’s health. Some children or teens may have blood tests or imaging tests as part of regular follow-up care, but testing recommendations depend on several factors, including the type and stage of cancer originally diagnosed and the types of treatment given.
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 and include physical problems, such as heart and lung problems, as well as emotional and cognitive (memory, thinking, and attention) problems, such as anxiety, depression, and learning difficulties. Patients treated for Ewing sarcoma have a higher risk of developing later problems, such as leukemias and solid tumors, than people in the general population.
Based on the type of treatment your child received, the doctor will recommend what examinations and tests are needed to check for late effects. Children and teens 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 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 your child’s 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 the patient’s personal health record
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 the patient enters adulthood, he or she has a clear, written history of the diagnosis, the treatment given, and the doctor’s recommendations about the schedule for follow-up care. ASCO offers forms to help create a treatment summary to keep track of the cancer treatment your child received and develop a survivorship care plan once treatment is completed.
Some children or teens 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 your health care team about your child’s ongoing medical care and any concerns you have about his or her 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 him or her, as well as all future health care providers. Details about the specific cancer treatment given are very valuable to the health care professionals who will care for your child throughout his or her lifetime.
The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a cancer diagnosis. Or, use the menu to choose another section to continue reading this guide.