Managing Late Effects of Childhood Cancer

Approved by the Cancer.Net Editorial Board, 10/2022

Late effects or long-term side effects are conditions that develop or are still present 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 children experience late effects. That's why it is important to learn and talk about possible late effects with your doctor, even before treatment begins. If you are a parent, you may want to ask your child's health care team about late effects to watch for. You can also ask how the team may try to prevent them or help manage them later.

This article will give you tips on managing your or your child's late effects of childhood cancer. Learn more about the different types of long-term effects of childhood cancer.

Before treatment starts

Ask the oncologist about potential late effects of any treatment that is being considered. If you are a parent, this may be your child's pediatric oncologist, a doctor who specializes in treating childhood cancer. If you are a teen or young adult, you may be seeing a pediatric oncologist or an oncologist who treats adults.

Consider asking these questions:

  • What are the possible late effects of each treatment in the recommended treatment plan?

  • Can we do anything to lower the risks of these happening?

  • What are the signs and symptoms of late effects?

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

  • What is your experience caring for long-term cancer survivors?

  • Can you recommend a follow-up clinic that specializes in late effects?

During treatment

Work with the health care team to create a document called a treatment summary, which gives the details of your cancer care. A treatment summary should include:

  • The patient's name and birth date

  • The date of cancer diagnosis and any recurrence

  • The type of cancer, including the tissue or cell type and stage or grade

  • The name of the hospital or other place where treatment was given

  • The name and phone number of the primary oncologist

  • When treatments started and ended

  • Details about any medications given during treatment, including total doses received

  • Affected body sites and radiation doses

  • Other treatments, such as a bone marrow/stem cell transplant

  • Any problems related to treatment

  • Possible long-term effects of treatment

  • Recommendations for follow-up 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.

During your treatment, work with the health care team to update this document regularly and give a copy to all of your health care providers. This is important to do to create a reference document, because some details of even the most important memories can fade over time. At the end of cancer treatment, you will have a summary of what treatments were given and other key information about your experience.

It is also possible to get a treatment summary after cancer treatment ends. Keep a copy in your personal records and share with future doctors and other health care providers throughout your lifetime.

If you are a parent, 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 care is important after cancer treatment. At first, these checkups focus on making sure the cancer has not come back. Checking for possible late effects of treatment usually starts about 2 years after treatment ends as part of these follow-up appointments. This is also called survivorship care.

If you or your child had cancer, these checkups should continue for life. They help make sure survivors stay healthy, manage late effects, and lead a healthy lifestyle.

Checkups and screening tests

As a survivor of childhood or young adult cancer, you need a checkup at least once a year. At this checkup, your health care team will do a physical examination. They may also order screening tests, such as:

  • Blood tests

  • X-rays or other imaging scans, such as a CT scan or MRI

  • Tests for specific organs, such as an echocardiogram to check the heart

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

Clinics for cancer survivors

During follow-up care checkups, you might see the oncologist who managed the original cancer treatment. Or, you or your child might go to a specialized clinic for survivors. These clinics have health care providers who are familiar with the late effects of childhood and young adult cancers. Services include:

  • Education about potential late effects

  • Testing and checkups for late effects

  • Referral to doctors who can treat the effects

  • Help with school or work challenges related to treatment

  • Emotional support for survivors and families

  • Sexual and reproductive health information

  • Wellness and healthy lifestyle information

  • Help with financial and insurance issues

These clinics can also help you or your child find a primary care doctor or other health provider who sees adults. And, they can help with the transition from pediatric to adult medical care.

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

Ask the health care team for help finding a clinic for cancer survivors. Some clinics offer a complete, one-time consultation to develop a long term plan for late effects of childhood or young adult cancer.

Coping with late effects

Some survivors are anxious about getting checkups, which is a form of scanxiety, and may hesitate to go to a clinic for survivors. They may be tired of going to appointments or afraid of finding they have more medical problems. It might help to know that most late effects are often not severe and are manageable with current treatments.

And, finding problems early is another benefit of going to a survivors clinic. Late effects that are found early may be easier to treat. Survivors can also learn ways to lower their risks by leading a healthy lifestyle. Getting regular survivorship care can help give a sense of control about the future.

Lowering the risk of late effects

These general tips may help make late effects less likely or less severe. They can also reduce the chances of developing other types of cancer or diseases.

Learn more about general tips for healthy living during survivorship. Talk with your team about specific recommendations for you, including about eating well and exercising.

Questions to ask the health care team

Consider asking your health care team or your child's health care team these questions about managing late effects:

  • Are there late effects that are more common with the type of cancer I was diagnosed with or the type of cancer treatment I will receive or received?

  • What can be done to prevent or relieve long-term or late effects?

  • What other specialists (such as a cardiologist or endocrinologist) should I see to watch for potential late effects?

  • What signs or symptoms of late effects should I watch for?

  • Who should I call if I see signs or symptoms? How soon?

  • Can you provide me with a treatment plan summary and survivorship care plan?

  • Why is it important that I attend follow-up care appointments?

  • Who will lead my survivorship care after cancer treatment is complete?

  • If I'm nervous or anxious about having follow-up care, who can I talk with?

  • What are some things to do at home to support my health everyday?

Related Resources

Late Effects of Childhood Cancer

What It’s Like Being a Childhood Cancer Survivor


Childhood Cancer

More Information

Children's Oncology Group: Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers

National Cancer Institute: Late Effects of Treatment for Childhood Cancer