Late Effects of Treatment for Childhood Cancer (PDQ®)

As a National Cancer Institute (NCI)-designated Comprehensive Cancer Center, a core part of our mission is to educate patients and the community about cancer. The following summary is trusted information from the NCI.

General Information About Late Effects

The treatment of cancer may damage healthy cells at the same time it destroys cancer cells. Some cancer treatments, such as chemotherapy, radiation therapy, and bone marrow or stem cell transplant, stop the growth of rapidly dividing cells, such as cancer cells. Since bones, tissues, and organs that are growing with the child have cells that are also dividing rapidly, cancer treatment can prevent them from developing normally. Other cancer treatments include surgery to remove all or part of certain organs that have cancer in them. The damage from these cancer treatments can be mild or serious, and the effects may be seen during treatment or months to years later.

Side effects that continue or appear after cancer treatment has ended are called late effects. It is important for the parents and the patient to know that children treated for cancer (childhood cancer survivors) may develop late effects from their treatment.

Late effects of cancer treatment may affect the following in childhood cancer survivors:

  • Organs, bones, or body tissues.
  • Mood, feelings, and actions.
  • Thinking, learning, and memory.

The risk that a cancer treatment will cause late effects depends on many things, including the following:

  • The type of cancer and where it is in the body.
  • The child's age (when treated).
  • The type and amount of treatment.
  • The area treated.
  • Genetic factors or health problems the child had before the cancer.

Regular follow-up by health professionals who are expert in finding and treating late effects is important for the long-term health of childhood cancer survivors. Records about the cancer diagnosis and treatment, including all test results, should be kept by childhood cancer survivors (or their caregivers). This information may be used to help find and treat late effects.

Doctors are studying the late effects that cancer treatments cause in childhood cancer survivors. They are trying to find out if changing treatment can help prevent or lessen late effects in childhood cancer survivors.

Central Nervous System

Childhood cancer survivors who received radiation therapy to the head, brain surgery, or intrathecal chemotherapy are at risk of having problems in the following areas:

  • Thinking.
  • Learning.
  • Problem solving.
  • Speech.
  • Reading.
  • Writing.
  • Memory.
  • Coordinating movement between the eyes, hands, and other muscles.

Survivors may have learning disabilities or a lower IQ.

The following factors may increase the risk of CNS late effects:

  • Being young at the time of treatment (the younger the child, the greater the risk).
  • Having a tumor in the CNS.
  • Receiving certain combinations of treatment, such as high-dose chemotherapy and radiation therapy to the brain.

Treatment for these and other childhood cancers may cause CNS late effects:

Survivors of childhood cancer may have anxiety and depression related to physical changes, appearance, or the fear of cancer coming back. These problems may prevent survivors from returning to their normal routines and activities. They may also cause problems with personal relationships, education, employment, and health.

Being diagnosed with a life-threatening disease and receiving treatment for it is often traumatic. This trauma may cause a group of symptoms called post-traumatic stress disorder (PTSD). PTSD is defined as having certain symptoms following a stressful event that involved death or the threat of death, serious injury, or a threat to oneself or others. People who have survived very stressful situations, such as military combat or natural disasters, may also have PTSD.

PTSD can affect cancer survivors in the following ways:

  • Reliving the time they were diagnosed and treated for cancer, in nightmares or flashbacks, and thinking about it all the time.
  • Avoiding places, events, and people that remind them of the cancer experience.
  • Being constantly overexcited, fearful, irritable, or unable to sleep, or having trouble concentrating.

Family problems, little or no social support from family or friends, and stress not related to the cancer may increase the chances of having PTSD. Because avoiding places and persons connected to the cancer is part of PTSD, survivors with PTSD may not try to get the medical treatment they need.

Senses

The risk of hearing loss may be increased in childhood cancer survivors who received either of the following:

Risk may also be increased in childhood cancer survivors who were young at the time of treatment (the younger the child, the greater the risk).

Treatment for these and other childhood cancers may cause hearing late effects:

Eye late effects may include the following:

  • Bone growth problems around the eye socket that affect the shape of the child's face as it grows.
  • Dry eye.
  • Cataracts.
  • Damage to the optic nerve and retina.
  • Poor vision.
  • Drooping eyelids.
  • Eyelid tumors.

The following may increase the risk of damage to the eye or eye socket:

  • Being younger than 1 year at the time of treatment.
  • Tumor of the retina.

The risk may also be increased in childhood cancer survivors who had either of the following:

Radiation therapy for these and other childhood cancers may cause eye late effects:

Digestive System

Teeth and jaw late effects may include the following:

  • Teeth are small or do not have a normal shape.
  • The roots of the teeth are short.
  • Missing teeth.
  • New teeth come in at a later than normal age.
  • The head and face do not reach full growth.
  • Tooth enamel is not normal.
  • Salivary glands do not make enough saliva.
  • Tooth decay (including cavities) and gum disease.

The risk of teeth and jaw late effects may be increased in childhood cancer survivors who received any of the following:

Risk may also be increased in survivors who were younger than 3 years at the time of treatment.

It is important that childhood cancer survivors have regular dental checkups to help prevent or detect infection or decay.

Treatment for these and other childhood cancers may cause teeth and jaw late effects:

Liver late effects may include the following:

Hepatic fibrosis, hepatitis C infection, and veno-occlusive disease can cause long-term problems.

The risk of liver late effects may be increased in childhood cancer survivors who received any of the following:

Risk may also be increased in survivors who had liver disease before treatment or developed veno-occlusive disease during treatment.

Treatment for these and other childhood cancers may cause liver late effects:

Digestive tract late effects may include the following:

These effects may be caused by damage to the blood vessels, which may lead to long-term problems.

Treatment for these and other childhood cancers may cause digestive tract late effects:

Spleen

Spleen late effects may increase the risk of life-threatening bacterial infections.

The risk of spleen late effects may be increased in childhood cancer survivors who received either of the following:

It is very important that childhood cancer survivors who received either of these treatments keep immunizations up-to-date and receive antibiotics before having any dental work.

Heart

Heart late effects may include the following:

  • Abnormal heartbeat.
  • Disease of the heart muscle.
  • Congestive heart failure.
  • Increased risk of stroke, blood clots, and chest pains.
  • Tiring quickly during exercise.
  • Coronary artery disease (hardening of the heart arteries).

The following may increase the risk of heart late effects:

This risk may also increase as the amounts of anthracycline drugs and radiation used increase and as the time since treatment gets longer.

Treatment for these and other childhood cancers may cause heart late effects:

Lung

Lung late effects may include the following:

The risk of lung late effects may be increased in childhood cancer survivors who had either of the following:

Risk may also be increased in survivors who received any of the following:

Treatment for these and other childhood cancers may cause lung late effects:

Kidney

Kidney late effects may include the following:

The following may increase the risk of kidney late effects:

  • Having cancer in both kidneys.
  • Being young at the time of treatment (the younger the child, the greater the risk).
  • Having a genetic syndrome that increases the risk of kidney problems, such as Denys-Drash syndrome.

Risk may also be increased in childhood cancer survivors who received any of the following:

Thyroid

Thyroid late effects may include the following:

The risk of thyroid late effects may be increased in childhood cancer survivors who received either of the following:

The risk may also be greater in females and may increase as the amount of time since diagnosis gets longer.

Treatment for these and other childhood cancers may cause thyroid late effects:

Neuroendocrine System

Neuroendocrine late effects may include the following:

Their risk is affected as follows:

  • Low levels of growth hormone are more likely if the survivor:
  • Adult height that is shorter than normal is more likely if the survivor:
    • is male; or
    • received the transplant at a young age; or
    • received TBI in a single dose instead of divided doses.

Treatment for these and other childhood cancers may cause neuroendocrine late effects:

Musculoskeletal System

Bone late effects may include the following:

  • Bone pain.
  • Joint stiffness.
  • Weak or thin bones that can break easily.
  • Decreased amounts of calcium in bones.
  • Decreased bone and tissue growth in treated areas.

The following may increase the risk of bone late effects:

  • Being female.
  • Being older at the time of treatment.
  • Having low levels of estrogen or growth hormone.

Risk may also be increased in childhood cancer survivors who received either of the following:

Treatment for these and other childhood cancers may cause bone late effects:

The following may increase the risk of obesity:

  • Being female and having received treatment at age 4 years or younger, with high-dose radiation therapy to the head.
  • Being young at the time of treatment (the younger the child, the greater the risk).
  • Being slender at the time of diagnosis.
  • Having an increase in body fat at an earlier than normal age.

Treatment for these and other childhood cancers may cause obesity:

Reproductive System

Testicular late effects may cause infertility or a low sperm count. Low sperm counts may be temporary or permanent depending on the radiation dose and schedule, the area of the body treated, and the age when treated.

The risk of testicular late effects may be increased in childhood cancer survivors who received either of the following:

Treatment for these and other childhood cancers may cause testicular late effects:

Ovarian late effects may include the following:

The risk of ovarian late effects may be increased in childhood cancer survivors who received any of the following:

The uterus may become less elastic and grow to a size that is smaller than normal. This can cause an increased risk of miscarriage and premature birth. Growth of the fetus within the uterus may also be affected.

Late effects on pregnancies include increased risk of the following:

  • Miscarriage.
  • Ending the pregnancy for medical reasons.
  • Low birth-weight babies.
  • Early labor.
  • Premature delivery.
  • Abnormal position of the fetus.
  • Birth defects.

For male survivors of childhood cancer, there is an increased risk that their children may be stillborn.

Stem cell and bone marrow transplants that include total-body irradiation (TBI), cyclophosphamide, or busulfan may damage the ovaries. Problems with the ovaries, fertility, and the ability to carry a baby to term may occur.

The following methods may be used so that childhood cancer survivors can have children:

  • Freezing the eggs or sperm before cancer treatment in patients who have reached puberty.
  • In vitro fertilization (IVF).

There is a risk that there may be cancer cells in the saved eggs, sperm, or embryo. This risk is highest in patients who had cancer of the blood, testicles, or ovaries.

Survivors of childhood cancer may wonder if their children will have birth defects, inherited diseases, or cancer. There is a small increase in the risk of birth defects in the children of females who received radiation therapy to the lower back, but most children of childhood cancer survivors are born healthy.

There may be an increased risk of birth defects in children whose embryos were created in the laboratory and an increased risk of cancer in the children of cancer survivors who had second cancers.

Second Cancers

Certain factors related to treatment increase the risk of second cancers. These include the following:

Some childhood cancer survivors have an increased risk of developing a second cancer because they have certain genetic syndromes that also placed them at risk of developing the primary cancer. These include the following:

Frequent and careful follow-up exams are very important for these childhood cancer survivors.

Mortality

Improvements in cancer treatment have decreased the number of deaths from primary cancer. The number of late effects in childhood cancer survivors may increase with age, however, and survivors may not live as long as people who did not have cancer. The most common causes of death in childhood cancer survivors include the following:

Studies of the causes of late effects have led to changes in treatment. This has improved the quality of life for cancer survivors and helped to prevent deaths from late effects.

Long-Term Follow-Up

Follow-up care will be different for each person who has been treated for cancer, depending on the type of cancer, the type of treatment, and the person's general health. It is important that childhood cancer survivors receive regular exams by a health care provider who is familiar with their treatments and risks and who can recognize the early signs of late effects.

Childhood cancer survivors are more likely to need special education services, especially survivors of central nervous system tumors, leukemia, and Hodgkin disease.

The childhood cancer survivor's follow-up care will go on into adulthood. It ideally includes the survivor's primary doctor and specialists; educational, vocational, and social service systems; and the family.

Long-term follow-up improves the health and quality of life for cancer survivors and also helps doctors study the late effects of cancer treatments so that safer therapies for newly diagnosed children may be developed.

The quality of life enjoyed by cancer survivors may be improved by behaviors that promote their future health and well-being, such as a healthy diet, exercise, and regular medical and dental checkups. These self-care behaviors are especially important for cancer survivors because of their risk of treatment-related health problems. Healthy behaviors may make late effects less severe and lower the risk of other diseases.

Avoiding behaviors that are damaging to health is also important. Smoking, excess alcohol use, and the use of illegal drugs increase the risk of organ damage and, possibly, of second cancers.

To Learn More About Late Effects of Treatment for Childhood Cancer

For more information from the National Cancer Institute about late effects of treatment for childhood cancer, see the following:

For more childhood cancer information and other general cancer resources from the National Cancer Institute, see the following:



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