ON THIS PAGE: You will read about your child’s medical care after treatment for Wilms tumor is finished and why this follow-up care is important. Use the menu to see other pages.
Care for children diagnosed with cancer doesn’t end when active treatment has finished. Your child’s health care team will continue to check to make sure the Wilms tumor has not returned, manage any side effects, and monitor your child’s overall health. This is called follow-up care. All children treated for cancer, including Wilms tumor, 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. Follow-up care for a Wilms tumor includes regular visits to the doctor for physical examinations, blood and urine tests, and imaging tests, such as CT scans, ultrasounds, and x-rays. At first, these visits and tests will be frequent, such as every 3 months. The time between checkups will increase until 5 years after treatment, when your child will be scheduled for a follow-up visit once a year.
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. A recurrence of Wilms tumor is unlikely, but if it does happen, it is generally within the first 2 years after treatment ends.
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 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 stage of tumor 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 “scan-xiety.” Learn more about how to cope with this type of stress.
Managing long-term and late side effects of childhood cancer
The more time that has passed since treatment ended, the less likely the tumor will return. At this point, monitoring for late effects becomes an important part of follow-up visits. Late effects can occur almost anywhere in the body and include physical problems, such as heart and lung problems and second cancers, and emotional and cognitive (memory, thinking, and attention) problems, such as anxiety, depression, and learning difficulties.
Based on the type of treatment your child received, the doctor will recommend the examinations and tests needed to check for late effects. Usually, people will have blood tests to make sure no changes have occurred in their kidney function. This is especially important for people who have 1 kidney or had a partial nephrectomy. 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 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.
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 your child 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 when treatment is completed.
Some children continue to see their oncologist, while others transition back to the care of their family doctor or another health care professional. This decision depends on several factors, including:
The type and stage of tumor
Health insurance rules
Your family’s personal preferences
Talk with the 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, 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 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. Use the menu to choose a different section to read in this guide.