Follow-up care for childhood cancer survivors

Once your child’s disease is in remission, the pediatric hematologist-oncologist will continue to monitor your child’s response to treatment and check for signs of relapse. Members of their healthcare team can also help manage any side effects that continue after treatment. It is very important to keep all follow-up appointments, even if your child is feeling well.

A note on the word, ‘survivor’ 

When a person is diagnosed with cancer, they are considered a “survivor” at the time of diagnosis until the end of life. After a cancer diagnosis, some people feel empowered by the word “survivor,” and use it to describe themselves. Some people may not feel comfortable using the word until after treatment ends. Others may prefer to use different words. You and your child may each have different feelings about using the word. The different opinions and feelings people have about using the term “survivor” are all valid. You may encounter the term used in different ways.

What to expect

During the first year after treatment, your child will have frequent visits with their healthcare team, but as time goes on, they may need to be seen less often. Two years after the end of treatment, many childhood cancer survivors transition to long-term, specialized care at a survivorship clinic with a survivorship program that focuses on life after cancer. However, the timeline can differ based on your child’s unique needs and medical history. Coordination between your child's cancer specialists and pediatrician is essential to provide the best care.  

Survivors don't necessarily need a cancer specialist for routine checkups and screening, but they do need to see doctors who understand their previous treatment and its risks. Your child should visit their pediatrician or primary care physician at least once a year for a complete physical exam and any necessary tests. 

 Regular visits allow the doctor to: 

• Assess the full effects of therapy
• Detect and treat disease recurrence
• Identify and manage long-term and late effects of treatment 

Your pediatrician should also recommend a schedule for having your child's learning skills assessed. If your child appears to struggle with learning disabilities, special education methods can help. 

Your child's follow-up doctor visits are now part of the "new normal,” and these appointments may cause anxiety for you and your child. It's common to worry before doctor's visits about whether the cancer has returned. Anxieties should lessen as time passes and your child has more "good" checkups. 

Questions to ask members of your child’s healthcare team 

• Will you provide me with a written survivorship care plan?
• Which members of the healthcare team will be responsible for which aspects of my child’s follow-up care?
• What should my child’s pediatrician be watching for during appointments?
• Whom should I contact when I have questions?
• What are the signs and/or symptoms that may indicate a relapse or    recurrence?
• What are the possible long-term and late effects of my child’s treatment?
• What can be done to manage these side effects?
• Does my child need any immunizations?
• Are there any restrictions or precautions we should take at home, in activities, or at school?
• What can I do to promote my child’s well-being and encourage healthy lifestyle habits?
• Once my child becomes an adult, who can help with the transition from pediatric to adult healthcare? 

Adjusting to the “new normal” 

Without a doubt, the new normal is a time of adjustment for parents and children. You begin to understand some of the ways life will be forever changed because of the cancer experience. With your help, your child will be able to see that they can move forward and grow with an enhanced understanding of self and life. 

Talk with your treatment team about any fears you are feeling. Recognize that your fears and anxieties are a normal part of the healing process. Help your child talk about his or her fears, anxieties, anger, and hopes with you and the treatment team. 

Screening schedules 

Depending on the treatment your child received, they may need additional, ongoing tests to monitor for late effects. Baseline labs and other testing are often done at entry into survivorship care and then as recommended based on results, your child’s prior treatment, and his or her current health. Talk to the members of your child’s healthcare team to determine the best screening schedule for your child or if you have any questions or concerns.

Immunizations and allogeneic stem cell transplants

Children treated with an allogeneic stem cell transplant, which uses stem cells from a healthy donor, will need to be revaccinated, even if the child received the vaccines in the past. Children who did not receive an allogeneic stem cell transplant may not need to repeat all of the vaccines that they received in the past, but they may need new vaccines or boosters to complete the recommended vaccination schedule for their age-group.

Antibody titer test

After completing cancer treatment, the healthcare team may order an antibody titer test for your child. This test checks for the presence of antibodies in the blood. Antibodies are proteins that help the body fight against infection. The presence of specific antibodies in the blood can show whether or not your child has immunity to a certain disease. The results of the antibody titer test help the healthcare team to determine which vaccines or boosters your child needs.

The healthcare team will create a catch-up schedule for your child to receive the necessary vaccines. Depending on the treatment, some children can begin vaccinations 3 to 6 months after treatment ends. A child who has received a stem cell transplant may need to wait longer. The healthcare team that administered the stem cell transplant should be consulted to create an appropriate vaccination schedule for your child.

Survivorship care plan

Generally, “survivorship” refers to the health and well-being of a person after cancer treatment. Your child’s oncologist will help create a survivorship care plan for your child to guide follow-up care. Share the survivorship care plan with any healthcare providers your child sees. The survivorship care plan should include the 
following information: 

• A list of all your child’s healthcare providers: pediatrician, hematologist-oncologist, radiation oncologist, etc.
• Diagnosis summary with specifics such as stage, sites of involvement, and molecular or genetic markers
• Treatment summary with specifics such as names of chemotherapy or other drugs received, radiation dosage and site, response to treatment, and side effects
• Follow-up appointment schedule with coordinating provider and frequency
• Schedule for ongoing monitoring with recommended tests and frequency
• List of possible long-term and late effects
• Health and wellness lifestyle recommendations, such as nutrition, exercise, other cancer and disease screenings, and referrals to specialists (as needed) to assist with these recommendations

Access additional free resources

The Children's Oncology Group publishes a resource for clinicians called, Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers, which you can download at no cost. You may find it helpful to read and discuss the guidelines with your child's treatment team. The guide is reviewed and updated regularly by experts in survivorship care and provides recommendations for screening and management of potential late effects of treatment.  

The “Health Links” documents provided with the guidelines are written for patients and their families. As you read through these resources, write down any questions you want to address with members of your child’s healthcare team.  

Visit www.survivorshipguidelines.org to download the guidelines and Health Links. 

The Passport for Care Survivor website offers free access to resources, education, and tools for survivorship for childhood cancer survivors. 

Survivorship clinics 

Some treatment centers offer comprehensive follow-up care clinics for childhood cancer survivors. To find one near you, visit The National Children’s Cancer Society. 

When choosing a survivor program or treatment center for your child, you have several options to consider: 

• Survivorship programs that focus on life after cancer are offered at several major hospitals around the country.
• Some treatment centers have follow-up clinics that provide a multidisciplinary approach to monitoring and supporting cancer survivors.
• Some follow-up clinics specialize in caring for pediatric cancer survivors.\ 

Find more information on survivorship and life after treatment in our free booklet, Beyond Treatment.