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Late Effects of Treatment for Childhood Cancer (PDQ®)

Patient Version
Last Modified: 01/11/2012

Central Nervous System

Key Points for This Section


Brain and spinal cord late effects are more likely to occur after treatment for certain childhood cancers.

Treatment for these and other childhood cancers may cause brain and spinal cord late effects:

Radiation to the brain increases the risk of brain and spinal cord late effects.

The risk of health problems that affect the brain or spinal cord increases after treatment with the following:

When radiation to the brain and intrathecal chemotherapy are given at the same time, the risk of late effects is higher.

The following may also increase the risk of brain and spinal cord late effects:

Late effects that affect the brain and spinal cord may cause certain health problems.

Childhood cancer survivors who received radiation, intrathecal chemotherapy, or surgery to the brain or spinal cord are at risk of late effects to the brain and spinal cord. These include the following:

  • Headaches.
  • Loss of coordination and balance.
  • Seizures.
  • Loss of the myelin sheath that covers nerve fibers in the brain.
  • Movement disorders that affect the legs and eyes or the ability to speak and swallow.
  • Nerve damage in the hands or feet.
  • Stroke.
  • Hydrocephalus.
  • Loss of bladder and/or bowel control.

Survivors may also have late effects that affect thinking, learning and behavior.

Possible signs of brain and spinal cord late effects include headaches, loss of coordination, and seizures.

These symptoms may be caused by brain and spinal cord late effects:

  • Headache that may go away after vomiting.
  • Seizures.
  • Loss of balance, lack of coordination, or trouble walking.
  • Trouble speaking, swallowing or coordinating eye movements.
  • Numbness, tingling, weakness in the hands or feet; being unable to bend your ankle to lift your foot up.
  • Sudden numbness or weakness of the face, arm, or leg (especially on one side of the body).
  • Unusual sleepiness or change in activity level.
  • Unusual changes in personality or behavior.
  • A change in bowel habits or trouble urinating.
  • Increase in head size (in infants).
  • Sudden confusion, trouble speaking or understanding speech.
  • Sudden trouble seeing with one or both eyes.
  • Sudden severe headache with no known cause.

Other symptoms include the following:

  • Problems with memory.
  • Problems with paying attention.
  • Trouble with solving problems.
  • Trouble with organizing thoughts and tasks.
  • Ability to learn and use new information slows down.
  • Trouble learning to read, write, or do math.
  • Trouble coordinating movement between the eyes, hands, and other muscles.
  • Delays in normal development.
  • Social withdrawal.

Other conditions may cause the same symptoms. Talk to your doctor if you have any of these problems.

Certain tests and procedures are used to detect (find) and diagnose health problems in the brain and spinal cord.

These and other tests and procedures may be used to detect or diagnose brain and spinal cord late effects:

  • Physical exam and history: An exam of the body to check general signs of health, including checking for signs of disease, such as lumps or anything else that seems unusual. A history of the patient’s health habits and past illnesses and treatments will also be taken.
  • Neurological exam: A series of questions and tests to check the brain, spinal cord, and nerve function. The exam checks a person’s mental status, coordination, and ability to walk normally, and how well the muscles, senses, and reflexes work. This may also be called a neuro exam or a neurologic exam. In some cases, a more detailed exam may be done by a neurologist or neurosurgeon.
  • Neuropsychological assessment: A series of tests to examine the patient's mental processes and behavior. Areas that are checked usually include:
    • Knowing who and where you are and what day it is.
    • Ability to learn and remember new information.
    • Intelligence.
    • Ability to solve problems.
    • Use of oral and written language.
    • Eye-hand coordination.
    • Ability to organize information and tasks.

Talk to your doctor about whether you need to have tests and procedures to check for signs of brain and spinal cord late effects. If you do, find out how often they should be done.

Survivors of childhood cancer may have anxiety and depression related to their cancer.

Survivors of childhood cancer may have anxiety and depression related to physical changes, the way they look, or the fear of cancer coming back. This may cause problems with personal relationships, education, employment, and health.

Some childhood cancer survivors have post-traumatic stress disorder.

Being diagnosed and treated for a life-threatening disease may be traumatic. This trauma may cause post-traumatic stress disorder (PTSD). PTSD is defined as having certain behaviors following a stressful event that involved death or the threat of death, serious injury, or a threat to oneself or others.

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.

In general, childhood cancer survivors show low levels of PTSD, depending in part on the coping style of patients and their parents. Survivors who received radiation therapy to the head when younger than 4 years or survivors who received intensive treatment may be at higher risk of PTSD. 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 may be part of PTSD, survivors with PTSD may not get the medical treatment they need.

Teenagers who are diagnosed with cancer may have social problems later in life.

Teenagers who are diagnosed with cancer may reach fewer social milestones or reach them later in life than teenagers not diagnosed with cancer. Social milestones include having a first boyfriend, getting married, and having a child. They may also have trouble getting along with other people or feel like they are not liked by their peers.



Glossary Terms

acute lymphoblastic leukemia (uh-KYOOT LIM-foh-BLAS-tik loo-KEE-mee-uh)
An aggressive (fast-growing) type of leukemia (blood cancer) in which too many lymphoblasts (immature white blood cells) are found in the blood and bone marrow. Also called acute lymphocytic leukemia and ALL.
anxiety (ang-ZY-eh-tee)
Feelings of fear, dread, and uneasiness that may occur as a reaction to stress. A person with anxiety may sweat, feel restless and tense, and have a rapid heart beat. Extreme anxiety that happens often over time may be a sign of an anxiety disorder.
assessment (uh-SES-ment)
In healthcare, a process used to learn about a patient’s condition. This may include a complete medical history, medical tests, a physical exam, a test of learning skills, tests to find out if the patient is able to carry out the tasks of daily living, a mental health evaluation, and a review of social support and community resources available to the patient.
bladder (BLA-der)
The organ that stores urine.
blood-brain barrier (blud-brayn BAYR-ee-er)
A network of blood vessels and tissue that is made up of closely spaced cells and helps keep harmful substances from reaching the brain. The blood-brain barrier lets some substances, such as water, oxygen, carbon dioxide, and general anesthetics, pass into the brain. It also keeps out bacteria and other substances, such as many anticancer drugs. Also called BBB.
bowel (BOW-ul)
The long, tube-shaped organ in the abdomen that completes the process of digestion. The bowel has two parts, the small bowel and the large bowel. Also called intestine.
cancer (KAN-ser)
A term for diseases in which abnormal cells divide without control and can invade nearby tissues. Cancer cells can also spread to other parts of the body through the blood and lymph systems. There are several main types of cancer. Carcinoma is a cancer that begins in the skin or in tissues that line or cover internal organs. Sarcoma is a cancer that begins in bone, cartilage, fat, muscle, blood vessels, or other connective or supportive tissue. Leukemia is a cancer that starts in blood-forming tissue such as the bone marrow, and causes large numbers of abnormal blood cells to be produced and enter the blood. Lymphoma and multiple myeloma are cancers that begin in the cells of the immune system. Central nervous system cancers are cancers that begin in the tissues of the brain and spinal cord. Also called malignancy.
chemotherapy (KEE-moh-THAYR-uh-pee)
Treatment with drugs that kill cancer cells.
condition (kun-DIH-shun)
In medicine, a health problem with certain characteristics or symptoms.
confusion (kun-FYOO-zhun)
A mental state in which one is not thinking clearly.
depression (dee-PREH-shun)
A mental condition marked by ongoing feelings of sadness, despair, loss of energy, and difficulty dealing with normal daily life. Other symptoms of depression include feelings of worthlessness and hopelessness, loss of pleasure in activities, changes in eating or sleeping habits, and thoughts of death or suicide. Depression can affect anyone, and can be successfully treated. Depression affects 15-25% of cancer patients.
developmental stage (dee-VEH-lup-MEN-tul stayj)
The physical, mental, and emotional stages a child goes through as he or she grows and matures.
diagnosis (DY-ug-NOH-sis)
The process of identifying a disease, such as cancer, from its signs and symptoms.
disorder (dis-OR-der)
In medicine, a disturbance of normal functioning of the mind or body. Disorders may be caused by genetic factors, disease, or trauma.
fiber (FY-ber)
In food, fiber is the part of fruits, vegetables, legumes, and whole grains that cannot be digested. The fiber in food may help prevent cancer. In the body, fiber refers to tissue made of long threadlike cells, such as muscle fiber or nerve fiber.
fluid (FLOO-id)
A substance that flows smoothly and takes the shape of its container. Liquids and gases are fluids.
head and neck cancer (... KAN-ser)
Cancer that arises in the head or neck region (in the nasal cavity, sinuses, lips, mouth, salivary glands, throat, or larynx [voice box]).
high-dose chemotherapy (hy-dose kee-moh-THAYR-uh-pee)
An intensive drug treatment to kill cancer cells, but that also destroys the bone marrow and can cause other severe side effects. High-dose chemotherapy is usually followed by bone marrow or stem cell transplantation to rebuild the bone marrow.
high-dose radiation (hy-dose RAY-dee-AY-shun)
An amount of radiation that is greater than that given in typical radiation therapy. High-dose radiation is precisely directed at the tumor to avoid damaging healthy tissue, and may kill more cancer cells in fewer treatments. Also called HDR.
hydrocephalus (HY-droh-SEH-fuh-lus)
The abnormal buildup of cerebrospinal fluid in the ventricles of the brain.
intrathecal chemotherapy (IN-truh-THEE-kul KEE-moh-THAYR-uh-pee)
Treatment in which anticancer drugs are injected into the fluid-filled space between the thin layers of tissue that cover the brain and spinal cord.
intraventricular infusion (IN-truh-ven-TRIH-kyoo-ler in-FYOO-zhun)
The delivery of a drug into a fluid-filled cavity within the heart or brain.
late effects (layt eh-FEKTS)
Side effects of cancer treatment that appear months or years after treatment has ended. Late effects include physical and mental problems and second cancers.
medical history (MEH-dih-kul HIH-stuh-ree)
A record of information about a person’s health. A personal medical history may include information about allergies, illnesses, surgeries, immunizations, and results of physical exams and tests. It may also include information about medicines taken and health habits, such as diet and exercise. A family medical history includes health information about a person’s close family members (parents, grandparents, children, brothers, and sisters). This includes their current and past illnesses. A family medical history may show a pattern of certain diseases in a family.
myelin (MY-eh-lin)
The fatty substance that covers and protects nerves.
nerve (nerv)
A bundle of fibers that receives and sends messages between the body and the brain. The messages are sent by chemical and electrical changes in the cells that make up the nerves.
neurological exam (NOOR-oh-LAH-jih-kul eg-ZAM)
A series of questions and tests to check brain, spinal cord, and nerve function. The exam checks a person’s mental status, coordination, ability to walk, and how well the muscles, sensory systems, and deep tendon reflexes work.
neurologist (noor-AH-loh-jist)
A doctor who specializes in the diagnosis and treatment of disorders of the nervous system.
neurosurgeon (NOOR-oh-SER-jun)
A doctor who specializes in surgery on the brain, spine, and other parts of the nervous system.
oral (OR-ul)
By or having to do with the mouth.
physical examination (FIH-zih-kul eg-ZA-mih-NAY-shun)
An exam of the body to check for general signs of disease.
post-traumatic stress disorder (post-traw-MA-tik stres dis-OR-der)
An anxiety disorder that develops in reaction to physical injury or severe mental or emotional distress, such as military combat, violent assault, natural disaster, or other life-threatening events. Having cancer may also lead to post-traumatic stress disorder. Symptoms interfere with day-to-day living and include reliving the event in nightmares or flashbacks; avoiding people, places, and things connected to the event; feeling alone and losing interest in daily activities; and having trouble concentrating and sleeping. Also called PTSD.
radiation (RAY-dee-AY-shun)
Energy released in the form of particle or electromagnetic waves. Common sources of radiation include radon gas, cosmic rays from outer space, medical x-rays, and energy given off by a radioisotope (unstable form of a chemical element that releases radiation as it breaks down and becomes more stable).
radiation therapy (RAY-dee-AY-shun THAYR-uh-pee)
The use of high-energy radiation from x-rays, gamma rays, neutrons, protons, and other sources to kill cancer cells and shrink tumors. Radiation may come from a machine outside the body (external-beam radiation therapy), or it may come from radioactive material placed in the body near cancer cells (internal radiation therapy). Systemic radiation therapy uses a radioactive substance, such as a radiolabeled monoclonal antibody, that travels in the blood to tissues throughout the body. Also called irradiation and radiotherapy.
seizure (SEE-zher)
Sudden, uncontrolled body movements and changes in behavior that occur because of abnormal electrical activity in the brain. Symptoms include loss of awareness, changes in emotion, loss of muscle control, and shaking. Seizures may be caused by drugs, high fevers, head injuries, and certain diseases, such as epilepsy.
shunt (shunt)
In medicine, a passage that is made to allow blood or other fluid to move from one part of the body to another. For example, a surgeon may implant a tube to drain cerebrospinal fluid from the brain to the abdomen. A surgeon may also change normal blood flow by making a passage that leads from one blood vessel to another.
social support (SOH-shul suh-PORT)
A network of family, friends, neighbors, and community members that is available in times of need to give psychological, physical, and financial help.
spinal cord (SPY-nul kord)
A column of nerve tissue that runs from the base of the skull down the back. It is surrounded by three protective membranes, and is enclosed within the vertebrae (back bones). The spinal cord and the brain make up the central nervous system, and spinal cord nerves carry most messages between the brain and the rest of the body.
stress (stres)
The response of the body to physical, mental, or emotional pressure. This may make a person feel frustrated, angry, or anxious, and may cause unhealthy chemical changes in the body. Untreated, long-term stress may lead to many types of mental and physical health problems.
stroke (stroke)
In medicine, a loss of blood flow to part of the brain, which damages brain tissue. Strokes are caused by blood clots and broken blood vessels in the brain. Symptoms include dizziness, numbness, weakness on one side of the body, and problems with talking, writing, or understanding language. The risk of stroke is increased by high blood pressure, older age, smoking, diabetes, high cholesterol, heart disease, atherosclerosis (a build-up of fatty material and plaque inside the coronary arteries), and a family history of stroke.
surgery (SER-juh-ree)
A procedure to remove or repair a part of the body or to find out whether disease is present. An operation.
survivor (ser-VY-ver)
One who remains alive and continues to function during and after overcoming a serious hardship or life-threatening disease. In cancer, a person is considered to be a survivor from the time of diagnosis until the end of life.
symptom (SIMP-tum)
An indication that a person has a condition or disease. Some examples of symptoms are headache, fever, fatigue, nausea, vomiting, and pain.
trauma (TRAW-muh)
Injury to the body, or an event that causes long-lasting mental or emotional damage.
tumor (TOO-mer)
An abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Tumors may be benign (not cancer), or malignant (cancer). Also called neoplasm.
urine (YOOR-in)
Fluid containing water and waste products. Urine is made by the kidneys, stored in the bladder, and leaves the body through the urethra.
ventricle (VEN-trih-kul)
A fluid-filled cavity in the heart or brain.
vinblastine (vin-BLAS-teen)
The active ingredient in a drug used together with other drugs to treat several types of cancer, including advanced Hodgkin lymphoma and advanced testicular germinal-cell cancers. It is also being studied in the treatment of other types of cancer. Vinblastine comes from the periwinkle plant Vinca rosea Linn. It blocks cell growth by stopping cell division and may kill cancer cells. It is a type of vinca alkaloid and a type of antimitotic agent.
vinca alkaloid (VIN-kuh AL-kuh-LOYD)
A type of drug that blocks cell growth by stopping mitosis (cell division). Vinca alkaloids interfere with microtubules (cellular structures that help move chromosomes during mitosis). They are used to treat cancer. A vinca alkaloid is a type of mitotic inhibitor and a type of antimicrotubule agent.
vincristine (vin-KRIS-teen)
The active ingredient in a drug used to treat acute leukemia. It is used in combination with other drugs to treat Hodgkin disease, non-Hodgkin lymphoma, rhabdomyosarcoma, neuroblastoma, and Wilms tumor. Vincristine is also being studied in the treatment of other types of cancer. It blocks cell growth by stopping cell division. It is a type of vinca alkaloid and a type of antimitotic agent.
vomit (VAH-mit)
To eject some or all of the contents of the stomach through the mouth.