Managing Late Effects of Childhood Cancer

Approved by the Cancer.Net Editorial Board, 12/2019

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

Late effects are conditions that continue or develop 5 or more years after a cancer diagnosis. Some late effects can appear many years after cancer treatment ends.

Many people who had cancer as a child will experience late effects. Even though not every survivor of childhood cancer develops these conditions, it is helpful to learn and talk about possible late effects. Ask your child’s health care team about potential late effects to watch for and how they will help manage, treat, or try to prevent them.

Before treatment begins

Ask a pediatric oncologist about potential late effects of any treatment that is being considered. A pediatric oncologist is a doctor who specializes in treating childhood cancer.

To understand treatment risks, consider asking these questions:

What are the potential late effects of the recommended treatment(s)?
Can we do anything to lower the risks of late effects?
What are the signs and symptoms of late effects?
What should I do if I notice a late effect?
Do you have experience caring for cancer survivors over the long term?
Can you recommend a follow-up clinic that specializes in late effects?

During treatment

Work with your child's health care team to create a detailed summary of your child’s treatment. Update it regularly and give it to other healthcare providers who care for your child. At the end of your child’s treatment, you will have a summary of the major events and therapies.

Keep a copy on-hand during your child’s follow-up care. It will also be important for your child to keep a copy of this treatment summary as they enter adulthood and share it with all their future doctors. It will help those doctors provide the best care for your child.

A treatment summary should include:

Patient's name and birth date
Date of cancer diagnosis and date of any recurrence
Type of cancer, including tissue or cell type and stage or grade
Name of the hospital or other place of treatment
Name and phone number of the primary oncologist
Dates that treatments started and ended
Drug types and dosages of chemotherapy or other medications (if applicable)
Affected body sites and radiation doses (if applicable)
Other treatments like bone marrow transplantation/stem cell transplantation or transfusions (if applicable)
Treatment-related problems
Possible long-term effects of treatment
Recommendations for screening and checkups for late effects

Consider using ASCO's Cancer Treatment and Survivorship Care Plans. They provide a convenient way to store this information.

Do not worry if your child's treatment ended years ago. It is never too late to gather this information.

After treatment

Regular follow-up is important after cancer treatment. Early follow-up care focuses on making sure the cancer has not come back. Generally, screening for possible late effects of treatment begins about 2 years after treatment ends. Long-term follow-up care should continue for life. It helps to make sure survivors stay healthy and lead a healthy lifestyle.

Checkups and screening tests

Typically, a childhood cancer survivor needs a checkup at least once a year. During a checkup, the health care team will conduct a physical examination. They may also order screening tests. These may include:

Blood tests
Any x-rays and other imaging
Tests of how well specific organs are working (for example, an echocardiogram to test heart muscle)

The Children’s Oncology Group provides screening guidelines based on a patient's treatment and health history. Talk with your child's health care team to find out which screening tests are appropriate for your child and how often they may be needed. (Please note this link takes you to another, separate website.)

Follow-up clinics

Many health care centers now offer follow-up services for childhood cancer survivors.

Some survivors may continue to visit the oncologist who managed the original cancer treatment. However, many survivors now visit specialized follow-up care clinics. These clinics are staffed by health care providers familiar with the late effects of childhood cancer and provide a number of services:

Teaching patients and their family members about potential late effects
Screening and monitoring for late effects
Referring patients to doctors who treat areas of the body affected by late effects
Helping with treatment-related school and work challenges
Providing access to emotional support for survivors and family members
Offering wellness education and programs
Educating patients on reducing risk-taking behaviors, such as tobacco use
Providing information on sexual and reproductive health
Helping patients establish primary care and transition to age-appropriate adult health care
Offering help with health insurance and financial issues

Some clinics will see childhood cancer survivors until they are 18 to 21 years old. Others will see survivors of any age.

Ask your child’s health care team for help locating a follow-up clinic. You can also review the lists provided by the National Children's Cancer Society. (Please note this link takes you to another, separate website.) Some clinics offer a thorough, one-time evaluation to develop a long-term health care plan for late effects.

Coping with late effects

Some survivors are anxious about follow-up care and may hesitate to attend a follow-up clinic. They may be tired of receiving medical care or fear finding out about additional medical problems. However, it may help to know that serious late effects are uncommon, especially with current treatments.

Screening for late effects can help find problems earlier. This may help make them easier to manage. Attending a follow-up clinic may also help survivors learn ways to maintain a healthy lifestyle and lower their risks of late health problems. This can help a person regain a sense of control over their future.

Lowering risk of late effects

These tips may help reduce the severity of late effects and the risk of secondary cancers and other diseases:

Do not smoke or chew tobacco. Avoid secondhand smoke.
Protect your skin from too much sun exposure
Limit alcohol use
Do not use illegal drugs
Eat a healthy diet low in fat and high in fiber
Exercise regularly
Get recommended vaccinations, such as the human papilloma virus (HPV) immunization