Managing Late Effects of Childhood Cancer

Approved by the Cancer.Net Editorial Board, 04/2017

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 appear many years after cancer treatment ends.

Not all children who had cancer develop late effects. However, it helps to learn about the ones your child could experience. Ask your child’s health care team about how they will help manage, treat, or prevent them.

Before treatment begins

Ask a pediatric oncologist about potential late effects. A pediatric oncologist is a doctor who specializes in treating childhood cancer.

To understand treatment risks, consider asking these questions:

  • What are potential late effects of the recommended treatment?

  • Can we do anything to lower risks of late effects?

  • What are symptoms of late effects?

  • What should I do if I notice a late effect?

  • Do you have experience in caring for cancer survivors?

  • 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 treatment summary. Give it to other doctors who care for your child. Update it regularly.

Your child should keep a copy of the treatment summary forever. It will help doctors provide the best care in adulthood.

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

  • Place of treatment

  • Name and phone number of the primary oncologist

  • Dates that treatments started and ended

  • Drug type and dosage of chemotherapy (if applicable)

  • Radiation therapy area and dose (if applicable)

  • Other treatment information. For example, bone marrow 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.

Don’t worry if it’s been years since treatment finished. It’s never too late to gather the information.

After treatment

Regular follow-up screening is important after cancer treatment. Early follow-up care focuses on making sure that the cancer has not come back. Generally, screening for possible late effects of treatment begins within 2 years after treatment ends. Long-term follow-up care should continue throughout adulthood. It helps make sure that survivors stay healthy.

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

  • X-rays and other imaging tests 

  • Tests of how well specific organs are working (for example, an echocardiogram to test heart muscles)

The Children’s Oncology Group provides screening recommendations that vary based on a patient's treatment and health history. Talk with your child's health care team to find out which screening tests are needed. Ask how often to schedule them.

Follow-up clinics

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

Some survivors may continue to visit their oncologists. However, most survivors can visit follow-up care clinics. Clinic staff is familiar with the possible late effects of childhood cancer. The clinics provide a number of services:

  • Educating patients about potential late effects

  • Screening and monitoring late effects

  • Referring patients to doctors who specialize in 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 reproductive health

  • Helping patients transition to adult health care

  • Offering help with health insurance and financial issues

Some clinics will see survivors until they are 18 years old. Others will see patients 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 Pediatric Oncology Resource Center and the National Children's Cancer Society. Some clinics offer a thorough, one-time evaluation to develop a long-term health care plan for late effects.

Coping with late effects

Survivors may hesitate to receive follow-up care. They may feel tired of medical care. Or they may fear finding out about additional medical problems. However, it may help to know that serious late effects are rare, especially with current treatments. Screening for late effects can help find problems earlier, which can make them easier to manage. Survivors may also learn about ways to lower the risk of health problems during follow-up visits.

Lowering risk of late effects

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

  • Do not smoke or chew tobacco, and avoid secondhand smoke

  • Protect skin from too much sun exposure

  • Limit alcohol consumption

  • 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.

Learn more about cancer prevention and healthy living.

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