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Care for children diagnosed with cancer does not end when active treatment has finished. Your child’s 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. All children treated for cancer, including acute lymphoblastic leukemia (ALL), should have life-long, follow-up care.
Your child’s follow-up care may include regular physical examinations, medical test, or both. Doctors want to keep track of your child’s recovery in the months and years ahead. Patients should receive follow-up care regularly to monitor for the possible side effects listed in the Types of Treatment section of this guide for each treatment option, as well as for the risk of liver disease from chemotherapy or transfusion-related infection (both very rare) and the child's bone health. Talk with your child's doctor about possible side effects based on your child's specific treatment plan.
At first, check-ups will occur often. Then over time, these appointments will become more spread apart. Your child’s doctor can recommend the necessary screening tests to monitor their health. Follow-up care should address your child’s quality of life, including any developmental or emotional concerns.
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. Your child's doctor will ask specific questions about your child’s health. Some children 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 classification of cancer originally 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 “scanxiety.” Learn more about how to cope with this type of stress.
Managing long-term and late side effects of childhood cancer
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 after treatment has ended. Late effects can occur almost anywhere in the body. They include physical problems, such as heart problems, lung problems, and second cancers, which is a new type of cancer that happens in someone who has had cancer before. They can include problems with the patient's physical ability to have a child in the future, called infertility. They also include emotional problems, such as anxiety and depression, and problems with memory, thinking, and attention.
Based on the type of treatment your child received, the doctor will recommend what examinations and tests are needed to check for late effects. The possible long-term side effects associated with specific treatments are listed in the table below:
Type of Treatment |
Possible Late Effects |
---|---|
Chemotherapy with cyclophosphamide (Cytoxan, Neosar) |
Secondary cancers Infertility (the physical inability to have children) |
Chemotherapy with types of drugs called anthracyclines, such as doxorubicin (Adriamycin) or daunorubicin (Cerubidine) |
Heart problems |
Radiation therapy |
Hormone problems affecting growth and metabolism Secondary cancers Infertility Learning problems |
High-dose chemotherapy or spinal fluid injections of chemotherapy like methotrexate (multiple brand names) and cytarabine (Cytosar-U) |
Learning problems |
Organ/Tissue Affected |
Type of Treatment |
Possible Late Effects |
---|---|---|
Any tissue |
Radiation |
Benign and malignant (cancerous) tumors |
Bone marrow |
Chemotherapy with cyclophosphamide (Cytoxan, Neosar) and/or etoposide (VePesid, Toposar) |
Abnormal development of blood cells in the bone marrow (myelodysplasia); acute myeloid leukemia |
Bones |
Corticosteroids (prednisone, dexamethasone); methotrexate |
Weak bones (osteopenia, osteoporosis); Damage to bone joints (avascular necrosis) |
Brain |
Brain radiation High-dose chemotherapy or spinal fluid injections of chemotherapy like methotrexate (multiple brand names) and cytarabine (Cytosar-U) |
Problems with thinking skills affecting learning, attention |
Heart |
Chemotherapy with types of drugs called anthracyclines, such as doxorubicin (Adriamycin) or daunorubicin (Cerubidine) |
Weakening of heart muscle (cardiomyopathy) |
Kidney |
Methotrexate |
Reduced kidney function (usually short term effect seen during therapy) |
Liver |
Methotrexate |
Liver inflammation (usually short term effect during therapy) |
Nerves (peripheral) |
Vincristine |
Motor nerve weakness, sensory nerve injury causing tingling and numbness |
Pituitary gland |
Brain radiation |
Low levels of hormones important in growth, puberty and weight control |
Ovaries |
Cyclophosphamide |
Reduction of egg follicles; Infertility |
Testes |
Cyclophosphamide; testicular radiation |
Reduction of sperm count; Infertility |
Follow-up care should address your child’s quality of life, including any developmental or emotional concerns.
The Children's Oncology Group (COG) has studied the physical and psychological effects that childhood cancer survivors 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 record
You are encouraged to organize and keep a personal record of the child’s medical information. The doctor will help you create this. That way, as the child enters adulthood, he or she has 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 create a treatment summary to keep track of the cancer treatment your child received and develop a survivorship care plan when treatment is completed.
Some children continue to see their oncologist, while others transition back to the care of their pediatrician, primary care doctor, or another health care professional. This decision depends on several factors, including the type and classification 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 him or her, 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 your child throughout their lifetime.
The next section in this guide is Survivorship. It 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.