Wilms Tumor - Childhood: Follow-Up Care

Approved by the Cancer.Net Editorial Board, 07/2023

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 does not end when active treatment has finished. Your child’s health care team will continue to check that the Wilms tumor has not come back, manage any side effects, and monitor your child’s overall health. This is called follow-up care. All children who receive treatment for cancer, including a 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 computed tomography (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 start to be scheduled for a follow-up visit once a year.

Cancer rehabilitation may be recommended, and this could mean any of a wide range of services such as physical therapy, occupational 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 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. A recurrence of a 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 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

The more time that has passed since treatment has ended, the less likely it is that the tumor will return. At this point, monitoring for late effects that can occur months or even years after treatment has ended becomes a main part of follow-up visits. Late effects can occur almost anywhere in the body. They include physical problems, such as heart and lung problems or a second cancer, which is a new cancer that happens in someone who has had cancer before. They also include emotional challenges, such as anxiety and depression, and problems with memory, thinking, attention, and learning.

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 who 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, 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 tumor

  • Treatments received

  • Side effects

  • 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 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.