ON THIS PAGE: You will read about your child’s medical care after cancer treatment is completed and why this follow-up care is important. Use the menu to see other pages.
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 retinoblastoma, should have life-long, follow-up care.
Your child’s 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. Once a child has been free of retinoblastoma for 2 to 4 years after treatment and is considered cured, the emphasis during periodic follow-up visits changes. Pediatric oncologists will focus on enhancing the quality of the child’s life, including addressing developmental and emotional concerns.
If enucleation took place, most young children adapt well to the loss of 1 eye. Rarely, both eyes will need to be removed to save the child’s life. If both eyes are removed, the local educational system is required to provide special services. Parents are encouraged to investigate the school’s services and advocate on their child’s behalf. Talking with an oncology social worker may help. Other rehabilitation services may also be needed to help the child cope with the vision loss.
Cancer rehabilitation after retinoblastoma treatment could mean any of a wide range of services, such as physical therapy, career counseling, pain management, nutritional planning, and/or emotional counseling. The goal of rehabilitation is to help people regain control over many aspects of their lives and remain as independent 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. Your child's doctor will ask specific questions about your child’s health. Some children 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 may 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. 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 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.
Based on the type of treatment your child received and whether the child has the genetic form of retinoblastoma, the doctor will determine what evaluations are needed to check for long-term effects. This may include imaging studies (computed tomography scans or magnetic resonance imaging) and blood tests. Counseling will also be provided for children who have an increased risk of additional tumors later in life, such as those with retinoblastoma in both eyes and those with retinoblastoma in 1 eye who have a family history of the disease. Yearly visits to specialized ophthalmologic and medical oncologists are necessary in order to fully monitor the child’s recovery and to find any secondary cancer in its earliest stages. Follow-up care should also address any developmental or emotional concerns from having had cancer and its treatment.
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 of COG: www.survivorshipguidelines.org.
Keeping a child’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 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. The American Society of Clinical Oncology (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 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 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 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.