Late Effects of Childhood Cancer

Approved by the Cancer.Net Editorial Board, 06/2019

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

About 17 million cancer survivors live in the United States. Many of them are survivors of a childhood cancer.

In the last 30 years, treatments and supportive care have improved. As a result, more than 80% of children treated for cancer live 5 years or more after treatment. But they are at risk for long-term side effects, called "late effects" that are related to their prior treatments.

Late effects can develop during treatment and continue into survivorship. Or, they can develop many years after a cancer diagnosis.

It is important to know the following:

Some late effects may be related to particular types of cancer and/or treatments
Screening may be recommended to help find conditions earlier, when they may be most treatable.

Talk with your health care team about how to screen for, prevent, or manage late effects. This is an important part of your care after cancer treatment.

Causes of late effects

Any cancer treatment may cause late effects. A child's risk of developing late effects depends on many factors, including:

The type of cancer and its location in the body
The area of the body treated
The type and dose of treatment
Age when treated for cancer
Genetics and family history
General health
Other health problems that existed before the cancer diagnosis

Types of late effects of childhood cancer

These are potential late effects of childhood cancer:

Emotional problems. Long-term emotional effects may include anxiety, depression, and fear of the cancer coming back. Some survivors avoid health care because of difficult memories and emotions. However, this can harm their health as an adult.

Second cancers. Some survivors have a higher risk of a second cancer. This is a different type of cancer that happens after the first cancer diagnosis.

Common second cancers include skin, breast, and thyroid cancers. Radiation therapy and some types of chemotherapy have the strongest links to second cancers. Drugs with links to second cancers include:

Cyclophosphamide (Neosar)
Ifosfamide (Ifex)
Etoposide (Toposar, VePesid)
Daunorubicin (Cerubidine)
Doxorubicin (Adriamycin)

Learn more about second cancers.

Reproductive and sexual development problems. Both boys and girls have a higher risk of these problems after certain cancer treatments.

Infertility is one potential side effect. For men, infertility means not being able to father a child. In boys, these treatments may cause infertility:

Radiation therapy to the lower abdomen, pelvis, or testicles
Chemotherapy with drugs called alkylating agents, which include cyclophosphamide and ifosfamide

These treatments may also change levels of a male hormone called testosterone. This can affect puberty and sexual functioning. Learn more about fertility concerns and cancer treatment for men.

For women, infertility means not being able to conceive a child or maintain a pregnancy.

These treatments may cause infertility, irregular periods, and early menopause in girls:

Radiation therapy to the abdomen, pelvis, or lower spine
Chemotherapy with alkylating agents, such as cyclophosphamide and ifosfamide

These treatments also change levels of the female hormone, estradiol. This can affect puberty and sexual functioning.

Learn more about fertility concerns and cancer treatment for women.

Additionally, radiation therapy to the brain can affect the pituitary glands. These glands control male and female hormone levels. Hormone changes can affect fertility in boys and girls.

Growth, development, and hormone problems. Cancer treatments may affect the glands that make hormones. These glands are a part of the endocrine system and control many body functions, such as growth, metabolism, and puberty.

Types of treatment that can cause side effects related to the endocrine system are:

Radiation therapy near the brain, eyes, or ears. This can affect the pituitary gland. Children who have had radiation therapy to these areas before reaching their adult height may have problems with growth.

They may also reach puberty earlier or later than usual. Children who have had radiation therapy to the pituitary gland also have a higher chance of being overweight or obese. A doctor who specializes in treating hormone problems can test for these conditions and provide hormone treatments. This type of doctor is called an endocrinologist.
Radiation therapy to the muscles, bones, and soft tissues. This can lead to reduced or uneven growth of body parts. For example, it can lead to a curved spine called scoliosis.
Treatment with steroid drugs such as prednisone, dexamethasone, or methotrexate (multiple brand names are available for all 3 drugs). These drugs have direct effects on bone formation and can lead to low bone mineral density. When severe, it can result in osteoporosis. This is a disease that causes weak bones and increases the risk of broken bones. However, most children regain their bone density after stopping these medicines.

Children should receive regular checkups so that their doctor can make sure they do not have any growth problems through puberty.

Some children may receive x-rays to measure bone mineral density. Based on the results, the following may help improve bone density:

Dietary supplements
Special foods
Exercise

Learning and memory problems. The following treatments may increase the risk of learning and memory problems:

Radiation therapy to the brain
High doses of certain drugs, such as methotrexate

Resources are available for survivors who struggle with these issues. Ask your health care team for relevant referrals to:

School programs
State or county social services
Other educational and career services

These types of programs can provide survivors with tools and techniques to do well at school and work.

Heart problems. Drugs called anthracyclines may cause heart problems such as:

Abnormal heart rhythms
Weakness of the heart muscle
Heart failure

Anthracyclines include doxorubicin (available as a generic drug), daunorubicin (Cerubidine), idarubicin (Idamycin), mitoxantrone (available as a generic drug).

Additionally, radiation therapy to certain body parts can increase the risk of late heart effects. This includes radiation therapy to the chest, spine, or upper abdomen.

Possible radiation therapy-related late heart effects include:

Leaky heart valves
Problems with the heart’s blood vessels, such as coronary artery disease
Weakness of the heart muscle
Abnormal heart rhythms

Childhood cancer survivors that received anthracyclines should have regular follow-up care, specifically for heart health. These heart conditions may not cause symptoms early on.

Your doctor may ask you to get an electrocardiogram (ECG or EKG), echocardiogram, or similar imaging tests.

Lung and breathing problems. These types of treatment may cause lung damage:

Certain types of chemotherapy, including bleomycin (Blenoxane), carmustine (BiCNU), lomustine (CeeNU), or busulfan (Busulfex, Myleran)
Radiation therapy to the chest
Surgery to the chest
Bone marrow/stem cell transplantation

Children who receive cancer treatment at a younger age have a greater risk of lung and breathing problems.

Survivors should have a lung test called a pulmonary function test. Talk with your doctor about any breathing problems and how often to repeat this test.

Dental problems. These types of treatment may cause dental problems:

Radiation therapy to the mouth, head, or neck
Chemotherapy given to a child whose adult teeth have not formed

Radiation therapy may cause dry mouth, gum disease, and cavities. Chemotherapy may cause tooth development problems.

Childhood cancer survivors should have dental visits every 6 months. Talk with your child's dentist before and after treatment so they can help you lower potential late effects.

Digestive system problems. These types of treatment may cause gastrointestinal system problems:

Abdominal or pelvic surgery
Radiation therapy to the neck, chest, abdomen, or pelvis

Survivors should talk with a doctor if they have difficulty swallowing or these chronic symptoms:

Heartburn
Stomach pain
Constipation
Diarrhea
Nausea and vomiting

Hearing problems. These treatments may cause hearing problems:

Radiation therapy to the head or brain
Certain types of chemotherapy, such as cisplatin (Platinol) or carboplatin (Paraplatin)

Younger children have a higher risk of these problems. All childhood cancer survivors who receive the above treatments should visit an audiologist at least once after treatment. An audiologist is a specialist who diagnoses and treats hearing problems.

Survivors with hearing loss should receive testing every year or as needed.

Vision and eye problems. Steroids, bone marrow/stem cell transplants, and high-dose radiation therapy to the eye, eye socket, or brain may cause these problems:

Cataracts, or clouding of the eyes
Dry eyes
Other problems that can affect vision

Radioiodine treatment for thyroid cancer may cause the eye to make more tears.

Childhood cancer survivors who have had one of these treatments should see a doctor who treats eye diseases. This type of doctor is called an ophthalmologist.

Where to find survivorship care

People who have received treatment for childhood cancer should visit a survivorship center. They are located at many National Cancer Institute Comprehensive Cancer Centers. You can also consult with follow-up care clinics listed on the National Children's Cancer Society website.