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Watch the Cancer.Net Video: Late Effects of Childhood Cancer Treatment, with Lisa Diller, MD, adapted from this content.

This is the second article in a two-part series. It describes how to address potential late effects before, during, and after treatment. The first article outlines risk factors for late effects of childhood cancer and types of late effects.

Late effects are side effects of treatment that occur five or more years after treatment. Not all children treated for cancer will experience late effects, but it helps to learn about the possible late effects your child may experience, how the health care team will help manage, treat, and/or prevent late effects, and questions to ask the health care team.

Before treatment begins

Parents of a child diagnosed with cancer should discuss the possibility of late effects with a pediatric oncologist (a doctor who specializes in treating children with cancer) before treatment begins. A pediatric oncologist can help patients and families understand and weigh treatment risks.

These questions may be helpful when you talk with your child's doctor about follow-up care:

What are the potential late effects of the treatment you've recommended?
What can be done to lower risks for late effects during and after treatment?
What symptoms of late effects should I look for?
What do I do if I notice a late effect?
Do you have experience with treating cancer survivors?
Can you recommend a follow-up clinic that specializes in late effects?

During treatment

If your child is being treated for cancer, work with your child's doctor to create and regularly update a detailed summary of treatment information. This document can be used to create an individualized plan for late effects screening and check-ups. It's also important for other health care specialists who treat your child to have a copy. Once treatment has been completed, your child should keep a copy of the treatment summary to carry into adulthood.

A treatment summary should include the following information:

Patient's name and birth date
Original diagnosis date and date of any recurrence (return of the cancer)
Type of cancer, including details such as tissue or cell type and stage or grade
Place of treatment and name and phone number of the primary oncologist
Dates of all treatments, treatment types, methods of giving the treatment, parts of the body treated, doses, and number of treatment cycles
All drugs used in treatment, including steroids and antibiotics
Treatment-related complications
Date of treatment completion
Diagnostic tests performed and results
Possible long-term effects based on treatment
Recommendations for late effects screening tests and check-ups

You may begin to create your own form by using ASCO's cancer treatment summaries.

After treatment

After a child finishes treatment for cancer, he or she will need regular follow-up screening to confirm the absence of cancer and diagnose any potential late effects. Long-term follow-up care, which should continue throughout adulthood, helps ensure that survivors of childhood cancer stay healthy.

Check-ups and screening tests. Most childhood cancer survivors need to see their doctor at least once a year for a check-up, even if they feel healthy. Depending on the treatment received, a survivor may also need specific screening tests that can help detect late effects early. Screening tests may include imaging tests, such as x-rays or computed tomography (CT) scans; blood tests; and physical examinations. Screening recommendations are available at www.survivorshipguidelines.org. Recommendations vary based on a patient's treatment and health history. Talk with your child's doctor to determine which screening tests are needed and how often.

Follow-up clinics. Many hospitals and health facilities now offer follow-up clinics or services for survivors of childhood cancer. Follow-up care generally begins two years after treatment and focuses on monitoring late effects and general wellness, while survivors continue to see their oncologist for check-ups aimed at detecting potential recurrence. Staffed by health care providers familiar with the possible late effects of childhood cancer, follow-up clinics provide a number of services:

Education on potential late effects for a survivor's specific diagnosis and treatment
Screening for and monitoring of late effects
Referrals to doctors who specialize in areas of the body affected by late effects
Help with treatment-related school and work difficulties
Support for emotional issues of survivors and family members
Wellness education and programs
Education on reducing health risk-taking behavior, such as tobacco use
Information on reproductive health
Transition to adult health care
Assistance with health insurance and financial issues

Some clinics will see survivors until they are 18 years old, while others will see patients of any age. Ask your doctor to help you locate a follow-up clinic that meets your needs, or review the lists of follow-up clinics provided by the Pediatric Oncology Resource Center and the National Children's Cancer Society. If you can't find a clinic near you, some clinics are willing to see a survivor for a thorough, one-time evaluation to develop a long-term health care plan for late effects.

Coping with late effects

After undergoing cancer and its treatment, many survivors may be reluctant to continue to receive follow-up care because they fear finding additional health problems. Or, they feel that they have had enough experience with illness and don't want to continue to see doctors and get tested. However, it may help to know that serious late effects are rare. And, doctors are making progress in identifying and treating late effects. Finally, there are ways to lower your risk of late effects.

Minimizing risk of late effects

Survivors of childhood cancer can minimize severity of late effects and reduce the risk for second cancers and other diseases by following these tips: