General Information about Late Effects

The cancer itself or the treatment of cancer may cause health problems for childhood cancer survivors months or years after successful treatment has ended. Cancer treatments may harm the body's organs, bones, or tissues and cause health problems later in life. These health problems are called late effects. Treatments that may cause late effects include surgery, chemotherapy, radiation therapy, or stem cell transplant.

Doctors are studying the late effects caused by cancer treatment. They are working to improve treatments and stop or lessen late effects. While most late effects are not life-threatening, they may cause serious problems that affect health and quality of life.

Late effects in childhood cancer survivors may affect the following:

• Organs, tissues, and body function.
• Growth and development.
• Mood, feelings, and actions.
• Thinking, learning, and memory.
• Social and psychological adjustment.
• Risk of second cancers.

Some childhood cancer survivors will not have late effects. The risk of late effects depends on factors related to the patient, tumor, and treatment. These include the following:

• Tumor-related factors
  • Type of cancer.
  • Where the tumor is in the body.
  • How the tumor affects the way tissues and organs work.
• Treatment-related factors
  • Type of surgery.
  • Chemotherapy type, dose, and schedule.
  • Radiation therapy type, part of the body treated, and dose.
  • Stem cell transplant.
  • Use of two or more types of treatment at the same time.
  • Blood product transfusion.
• Patient-related factors
  • The child's gender.
  • The child’s age at diagnosis and treatment.
  • Length of time since diagnosis and treatment.
  • Certain changes in the child's genes.
  • Family history of cancer or other conditions.
  • Health problems the child had before being diagnosed with cancer.
  • Health habits.

New treatments for childhood cancer have decreased the number of deaths from the primary cancer. However, the number of late effects in childhood cancer survivors increases with longer time since treatment and with older age. Survivors may not live as long as people who did not have cancer. The most common causes of death in childhood cancer survivors are:

• The primary cancer comes back.
• A second (different) primary cancer forms.
• Heart and lung damage.

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

Regular follow-up by health professionals who are experts in finding and treating late effects is important for the long-term health of childhood cancer survivors. Follow-up care will be different for each person who has been treated for cancer. The type of care will depend on the type of cancer, the type of treatment, genetic factors, and the person's general health and health habits.

It is important that childhood cancer survivors have an exam at least once a year. The exams should be done by a health professional who is familiar with the survivor's risk for late effects and can recognize the early signs of late effects. Blood and imaging tests may also be done.

Long-term follow-up may improve 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 health and well-being. These include 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, illegal drug use, sun exposure, or not being physically active may worsen treatment-related organ damage and possibly increase the risk of second cancers.

Second Cancers

A different primary cancer that occurs at least two months after cancer treatment ends is called a second cancer. A second cancer may occur months or years after treatment is completed. The type of second cancer that occurs depends in part on the original type of cancer and the cancer treatment.

Second cancers that occur after cancer treatment include the following:

• Myelodysplastic syndrome and acute myeloid leukemia may appear less than 3 years after a primary cancer diagnosis of Hodgkin lymphoma, acute lymphoblastic leukemia, or sarcoma and treatment with chemotherapy that includes one of the following:
  • Alkylating agent such as cyclophosphamide, ifosfamide, mechlorethamine, melphalan, busulfan, carmustine, lomustine, chlorambucil, or dacarbazine.
  • Topoisomerase II inhibitor agent such as etoposide or teniposide.


• Solid tumors may appear more than 10 years after primary cancer diagnosis and treatment including:
  • Breast cancer after high-dose chest radiation treatment for Hodgkin lymphoma.
  • Thyroid cancer after neck radiation treatment for Hodgkin lymphoma, acute lymphocytic leukemia, or brain tumors, or after total-body irradiation (TBI) as part of a stem cell transplant.
  • Brain tumors after radiation treatment to the head for a primary brain tumor or for acute lymphocytic leukemia or non-Hodgkin lymphoma. When intrathecal methotrexate chemotherapy and radiation therapy are given together, the risk of a brain tumor is even higher.
  • Bone tumors after radiation treatment for retinoblastoma, Ewing sarcoma, and other cancers of the bone. Treatment with an alkylating agent also increases the risk of a bone tumor.
  • Lung cancer after radiation treatment to the chest for Hodgkin lymphoma, especially in patients who smoke.
  • Stomach or colorectal cancer after radiation therapy to the abdomen or chemotherapy. When radiation therapy and chemotherapy are given together, the risk of stomach or colorectal cancer is even higher.

Some childhood cancer survivors may have an increased risk of developing a second cancer because they have a family history of cancer or an inherited genetic syndrome such as Li-Fraumeni syndrome. Problems with the way DNA is repaired in cells and the way anticancer drugs are used in the body may also affect the risk of second cancers.

It is important for patients who have been treated for cancer to be checked for a second cancer before symptoms appear. This is called screening for a second cancer and may help find a second cancer at an early stage. When abnormal tissue or cancer is found early, it may be easier to treat. By the time symptoms appear, cancer may have begun to spread.

It is important to remember that your doctor does not necessarily think you have cancer if he or she suggests a screening test. Screening tests are given when you have no cancer symptoms. If a screening test result is abnormal, you may need to have more tests done to find out if you have a second cancer. These are called diagnostic tests.

All patients who have been treated for cancer should have a physical exam and medical history done once a year. A physical exam of the body is done to check general signs of health, including checking for signs of disease, such as lumps, changes in the skin, or anything else that seems unusual. A medical history is taken to learn about the patient’s health habits and past illnesses and treatments.

If the patient was treated for leukemia, a complete blood count (CBC) may be done. The CBC is usually done every year for 10 years after treatment with an alkylating agent or topoisomerase II inhibitor ends.

• Complete blood count (CBC) with differential: A procedure in which a sample of blood is drawn and checked for the following:
  • The number of red blood cells and platelets.
  • The number and type of white blood cells.
  • The amount of hemoglobin (the protein that carries oxygen) in the red blood cells.
  • The portion of the blood sample made up of red blood cells.

If the patient received radiation therapy, the following tests and procedures may be used:

• Skin exam: A doctor or nurse checks the skin for bumps or spots that look abnormal in color, size, shape, or texture, especially in the area where radiation was given. It is suggested that a skin exam be done once a year to check for signs of skin cancer.
• Mammogram: An x-ray of the breast. A mammogram may be done in women who had radiation to the chest and who do not have dense breasts. It is suggested that these women have a mammogram once a year starting 8 years after treatment or at age 25 years, whichever is later.
• MRI (magnetic resonance imaging): A procedure that uses a magnet, radio waves, and a computer to make a series of detailed pictures of areas inside the body. This procedure is also called nuclear magnetic resonance imaging (NMRI). An MRI may be done in women who had radiation to the chest and who have dense breasts. It is suggested that these women have an MRI once a year starting 8 years after treatment or at age 25 years, whichever is later.
• Breast self-exam: An exam of the breast by the patient. The patient carefully feels the breasts and under the arms for lumps or anything else that seems unusual. It is suggested that women treated with radiation therapy to the chest do a monthly breast self-exam beginning at puberty until age 25 years.
• Clinical breast exam (CBE): An exam of the breast by a doctor or other health professional. The doctor will carefully feel the breasts and under the arms for lumps or anything else that seems unusual. It is suggested that women treated with radiation therapy to the chest have a clinical breast exam every 6 months beginning at puberty until age 25 years.
• Colonoscopy: A procedure to look inside the rectum and colon for polyps, abnormal areas, or cancer. A colonoscope is inserted through the rectum into the colon. A colonoscope is a thin, tube-like instrument with a light and a lens for viewing. It may also have a tool to remove polyps or tissue samples, which are checked under a microscope for signs of cancer. It is suggested that childhood cancer survivors who had radiation to the abdomen, pelvis, or spine have a colonoscopy every 5 years. This begins at age 35 years or 10 years after treatment ended, whichever is later.

Cardiovascular System

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

• Acute lymphoblastic leukemia (ALL).
• Acute myelogenous leukemia (AML).
• Brain and spinal cord tumors.
• Head and neck cancer.
• Hodgkin lymphoma.
• Non-Hodgkin lymphoma.
• Rhabdomyosarcoma.
• Wilms tumor.
• Cancers treated with a stem cell transplant.

The risk of health problems involving the heart and blood vessels increases after treatment with the following:

• Radiation to the chest or spine: The risk of problems depends on the part of the heart that was exposed to radiation, the amount of radiation given, and whether the radiation was given in small or large doses.
• Radiation to the brain or neck: The risk of problems depends on the part of the brain or neck that was treated with radiation and the amount of radiation given.
• Chemotherapy: Chemotherapy with anthracyclines such as doxorubicin, daunorubicin, idarubicin, epirubicin, and mitoxantrone are types of anthracyclines. The risk of problems depends on the total dose of anthracycline given. It also depends on whether a drug called dexrazoxane was given during treatment with anthracyclines to lessen heart and blood vessel damage.
• Stem cell transplant.
• Biologic therapy.

Childhood cancer survivors who were treated with both radiation to the chest and chemotherapy using anthracyclines are at greatest risk.

The following may also increase the risk of heart and blood vessel late effects:

• Being female.
• Being young at the time of treatment (the younger the child, the greater the risk).
• Having other risk factors for heart disease, such as a family history of heart disease, being overweight, smoking, or having high blood pressure, high cholesterol, or diabetes.

Childhood cancer survivors who received radiation or certain chemotherapy drugs are at risk of late effects to the heart and blood vessels. These include the following:

• Abnormal heartbeat.
• Weakened heart muscle.
• Inflamed heart or sac around the heart.
• Damage to the heart valves.
• Coronary artery disease (hardening of the heart arteries).
• Congestive heart failure.
• Chest pain or heart attack.
• Blood clots or stroke.
• Carotid artery disease.

These and other symptoms may be caused by heart and blood vessel late effects:

• Trouble breathing, especially when you are lying down.
• Heartbeat that is too slow, too fast, or different from the heart's normal rhythm.
• Chest pain.
• Swelling of the feet, ankles, legs, or abdomen.
• When exposed to cold or having strong emotions, the fingers, toes, ears, or nose become white and then turn blue. When this happens to the fingers, there may also be pain and tingling.
• Sudden numbness or weakness of the face, arm, or leg (especially on one side of the body).
• Sudden confusion, trouble speaking or understanding speech.
• Sudden trouble seeing with one or both eyes.
• Sudden trouble walking, dizziness, or loss of balance or coordination.
• Sudden severe headache with no known cause.

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

These and other tests and procedures may be used to detect or diagnose heart and blood vessel late effects:

• Physical exam and history: An exam of the body to check general signs of health, including checking the heart for signs of disease, such as abnormal heart beat or anything else that seems unusual. A history of the patient’s health habits and past illnesses and treatments will also be taken.
• Electrocardiogram (EKG): A recording of the heart's electrical activity to evaluate its rate and rhythm. A number of small pads (electrodes) are placed on the patient’s chest, arms, and legs, and are connected by wires to the EKG machine. Heart activity is then recorded as a line graph on paper. Electrical activity that is faster or slower than normal may be a sign of heart disease or damage.
• Echocardiogram: A procedure in which high-energy sound waves (ultrasound) are bounced off the heart and nearby tissues or organs and make echoes. A moving picture is made of the heart and heart valves as blood is pumped through the heart.
• Ultrasound exam: A procedure in which high-energy sound waves (ultrasound) are bounced off internal tissues or organs such as the heart and make echoes. The echoes form a picture of body tissues called a sonogram. The picture can be printed to be looked at later.
• Lipid profile studies: A procedure in which a blood sample is checked to measure the amounts of triglycerides, cholesterol, and low- and high-density lipoprotein cholesterol in the blood.

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

Childhood cancer survivors with heart and blood vessel late effects should take care to protect their health, including:

• Having a healthy weight.
• Eating a heart-healthy diet.
• Having regular exercise.
• Talking to their doctor before starting an intense exercise program.

Central Nervous System

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

• Acute lymphoblastic leukemia (ALL).
• Brain and spinal cord tumors.
• Head and neck cancers.

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

• Radiation to the brain, especially high doses of radiation.
• Intrathecal/intraventricular chemotherapy or high-doses of chemotherapy that cross the blood-brain barrier (protective lining around the brain).
• Chemotherapy with vinca alkaloids such as vincristine or vinblastine.
• Surgery to remove a tumor on the brain or spinal cord.

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:

• Being young at the time of treatment.
• Having hydrocephalus and a shunt placed to removed the extra fluid from the ventricles.
• Having seizures caused by the tumor.

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.

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.

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 physical changes, the way they look, or the fear of cancer coming back. This may cause problems with personal relationships, education, employment, and health.

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 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.

Digestive System

Treatment for these and other childhood cancers may cause the late effect of problems with teeth and jaws:

• Head and neck cancers.
• Hodgkin lymphoma.
• Leukemia that has spread to the brain and spinal cord.
• Nasopharyngeal cancer.
• Neuroblastoma.

The risk of health problems that affect the teeth and jaws increases after treatment with the following:

• Radiation therapy to the head and neck.
• Total-body irradiation (TBI) as part of a stem cell transplant.
• Chemotherapy with higher doses of alkylating agents such as cyclophosphamide.

Risk may also be increased in survivors who were younger than 5 years at the time of treatment because their permanent teeth had not fully formed.

Childhood cancer survivors who received radiation to the head and neck or certain chemotherapy drugs are at risk of late effects to the teeth and jaws. These include the following:

• Teeth that are not normal.
• Tooth decay (including cavities) and gum disease.
• Salivary glands do not make enough saliva.
• Jaw bones do not fully form.
• Death of the bone cells in the jaw.

These symptoms may be caused by late effects of the teeth and jaws:

• Teeth are small or do not have a normal shape.
• Missing permanent teeth.
• Permanent teeth come in at a later than normal age.
• More tooth decay (cavities) and gum disease than normal.
• Dry mouth.
• Jaw pain.
• Jaws do not open and close the way they should.

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

These and other tests and procedures may be used to detect or diagnose late effects of the teeth and jaws:

• Dental exam and history: An exam of the teeth, mouth, and jaws to check general signs of dental health, including checking for signs of disease, such as cavities or anything that seems unusual. A history of the patient’s health habits and past illnesses and treatments will also be taken. This may also be called a dental check-up.
• Panorex x-ray: An x-ray of all of the teeth and their roots. An x-ray is a type of energy beam that can go through the body and onto film, making a picture of areas inside the body.
• X-ray of the jaws: An x-ray of the jaws. An x-ray is a type of energy beam that can go through the body and onto film, making a picture of areas inside the body.
• CT scan (CAT scan): A procedure that makes a series of detailed pictures of areas inside the body, such as the head and neck, taken from different angles. The pictures are made by a computer linked to an x-ray machine. This procedure is also called computed tomography, computerized tomography, or computerized axial tomography.
• MRI (magnetic resonance imaging): A procedure that uses a magnet, radio waves, and a computer to make a series of detailed pictures of areas inside the body, such as the head and neck. This procedure is also called nuclear magnetic resonance imaging (NMRI).
• Biopsy: The removal of bone cells from the jaw so they can be viewed under a microscope to check for signs of bone death after radiation therapy.

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

A dental check-up is suggested every 6 months for survivors of childhood cancer. Also a dental cleaning and fluoride treatment is suggested every 6 months.

Treatment for these and other childhood cancers may cause late effects of the digestive tract (esophagus, stomach, small and large intestines, rectum and anus):

• Rhabdomyosarcoma of the bladder or prostate, or near the testicles.
• Wilms tumor.

The risk of health problems that affect the digestive tract increases after treatment with the following:

• Radiation therapy to the esophagus, bladder, prostate, or testicles which are near the abdomen, may cause digestive tract problems that begin quickly and last for a short time. In some patients, however, digestive tract problems are delayed and long-lasting. These late effects are caused by radiation therapy that damages the blood vessels. Receiving chemotherapy drugs such as dactinomycin or anthracyclines together with radiation therapy may increase this risk.
• Pelvic surgery, surgery to remove the bladder, or abdominal laparotomy may also cause digestive tract late effects.
• Chemotherapy with alkylating agents, such as cyclophosphamide, procarbazine, and ifosfamide or with platinum agents such as cisplatin or carboplatin.
• Stem cell transplant and a history of chronic graft-versus-host disease.

The following may also increase the risk of digestive tract late effects:

• Being younger than 5 years old at the time of treatment.
• Treatment with both radiation therapy and chemotherapy.

Digestive tract late effects include the following:

• A narrowing of the esophagus or intestine.
• Blocked bowel (chronic).
• Bowel perforation (a hole in the intestine).
• Intestine is not able to absorb nutrients from food.
• Infection of the intestines.

These symptoms may be caused by digestive tract late effects:

• Trouble swallowing or feeling like food is stuck in your throat.
• Heartburn.
• Fever with severe pain in the abdomen and nausea.
• Pain in the abdomen.
• A change in bowel habits (constipation or diarrhea).
• Nausea and vomiting.
• Frequent gas pains, bloating, fullness, or cramps.
• Weight loss for no known reason.

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

These and other tests and procedures may be used to detect or diagnose digestive tract 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 abdominal tenderness or anything else that seems unusual. A history of the patient’s health habits and past illnesses and treatments will also be taken.
• Blood chemistry studies: A procedure in which a blood sample is checked to measure the amounts of certain substances released into the blood by organs and tissues in the body. An unusual (higher or lower than normal) amount of a substance can be a sign of disease in the organ or tissue that makes it.
• X-ray: An x-ray is a type of energy beam that can go through the body and onto film, making a picture of areas inside the body. An x-ray may be taken of the abdomen, kidney, ureter, or bladder to check for signs of disease.
• Digital rectal exam: An exam of the rectum. The doctor or nurse inserts a lubricated, gloved finger into the rectum to feel for lumps or anything else that seems unusual.

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

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

• Cancers treated with a stem cell transplant.
• Wilms tumor.
• Acute lymphoblastic leukemia (ALL).

The risk of liver or bile duct late effects may be increased in childhood cancer survivors treated with one of the following:

• Chemotherapy that includes high-dose cyclophosphamide as part of a stem cell transplant.
• Chemotherapy drugs such as 6-mercaptopurine, 6-thioguanine, and methotrexate.
• Radiation therapy to the liver and bile ducts. The risk depends on the following:
  • The dose of radiation and how much of the liver is treated.
  • Age when treated (the younger the age, the higher the risk).
  • Whether there was surgery to remove part of the liver.
  • Whether chemotherapy was given together with radiation therapy.
  • Whether the patient has hepatitis or too much iron in the body.

Being infected with the hepatitis B virus, hepatitis C virus, or both also increases the risk of liver damage.

Liver and bile duct late effects include the following:

• Liver doesn’t work the way it should or stops working.
• Gallstones.
• Hepatitis B or C infection.
• Liver damage caused by veno-occlusive disease/sinusoidal obstruction syndrome (VOD/SOS).
• Liver fibrosis (an overgrowth of connective tissue in the liver) or cirrhosis.
• Liver failure.

These symptoms may be caused by liver and bile duct late effects:

• Weight gain.
• Extended abdomen.
• Nausea and vomiting.
• Pain in the abdomen near the ribs, often on the right side.
• Pain in the abdomen after eating a fatty meal.
• Jaundice (yellowing of the skin and whites of the eyes).
• Light-colored bowel movements.
• Dark-colored urine.
• A lot of gas.
• Lack of appetite.

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

These and other tests and procedures may be used to detect or diagnose liver or bile duct 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.
• Blood chemistry studies: A procedure in which a blood sample is checked to measure the amounts of certain substances released into the blood by organs and tissues in the body. An unusual (higher or lower than normal) amount of a substance can be a sign of disease in the organ or tissue that makes it. For example, there may be a higher level of bilirubin in the body if the liver has been damaged.
• Ferritin level: A procedure in which a blood sample is checked to measure the amount of ferritin. Ferritin is a protein that binds to iron and stores it for use by the body. After a stem cell transplant, a high ferritin level may be a sign of liver disease.
• Blood studies to check how well the blood clots: A procedure in which a blood sample is checked to measure the amount of platelets in the body or how long it takes for the blood to clot.
• Hepatitis assay: A procedure in which a blood sample is checked for pieces of the hepatitis virus. The blood sample may also be used to measure how much hepatitis virus is in the blood. All patients who had blood transfusions before 1972 should be screened for hepatitis B and before 1993 should be screened for hepatitis C.
• Ultrasound exam: A procedure in which high-energy sound waves (ultrasound) are bounced off internal tissues or organs, such as the gall bladder, and make echoes. The echoes form a picture of body tissues called a sonogram. The picture can be printed to be looked at later.

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

Childhood cancer survivors with liver late effects should take care to protect their health, including:

• Having a healthy weight.
• Not drinking alcohol.
• Getting vaccines for hepatitis A and hepatitis B viruses.

Endocrine System

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

• Acute lymphoblastic leukemia (ALL).
• Brain tumors.
• Head and neck cancers.
• Hodgkin lymphoma.

The risk of thyroid late effects may be increased in childhood cancer survivors after treatment with any of the following:

• Radiation therapy to the brain and spinal cord or head and neck.
• Total-body irradiation (TBI) as part of a stem cell transplant.

The risk also is increased in females, in survivors who were a young age at the time of treatment, and as the time since treatment gets longer.

Thyroid late effects include the following:

• Hypothyroidism (not enough thyroid hormone): The most common thyroid late effect. It usually occurs 3 to 5 years after treatment ends but may occur later. It is more common in girls than boys.
• Hyperthyroidism (too much thyroid hormone): It usually occurs 3 to 5 years after treatment ends.
• Goiter.
• Lumps in the thyroid: Usually occur 10 years after treatment ends. It is more common in girls than boys.

These symptoms may be caused by thyroid late effects:

Hypothyroidism (too little thyroid hormone)
• Feeling tired or weak.
• Being more sensitive to cold.
• Pale, dry skin.
• Coarse and thinning hair.
• Brittle fingernails.
• Hoarse voice.
• Muscle and joint aches and stiffness.
• Constipation.
• Menstrual periods that are heavier than normal.
• Depression or trouble with memory or being able to concentrate.

Hyperthyroidism (too much thyroid hormone)
• Feeling nervous, anxious, or moody.
• Trouble sleeping.
• Feeling tired or weak.
• Having shaky hands.
• Having a fast heartbeat.
• Having red, warm skin that may be itchy.
• Having fine, soft hair that is falling out.
• Having frequent or loose bowel movements.
• Weight loss for no known reason.

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

These and other tests and procedures may be used to detect or diagnose thyroid 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.
• Blood hormone studies: A procedure in which a blood sample is checked to measure the amounts of certain hormones released into the blood by organs and tissues in the body. An unusual (higher or lower than normal) amount of a substance can be a sign of disease in the organ or tissue that makes it. The blood may be checked for abnormal levels of thyroid-stimulating hormone (TSH) or free thyroxine (T4).
• Ultrasound exam: A procedure in which high-energy sound waves (ultrasound) are bounced off internal tissues or organs and make echoes. The echoes form a picture of body tissues called a sonogram. The picture can be printed to be looked at later. This procedure can show the size of the thyroid and whether there are nodules (lumps) on the thyroid.

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

Immune System

The risk of health problems that affect the immune system increases after treatment with the following:

• Surgery to remove the spleen.
• High-dose radiation therapy to the spleen.
• Stem cell transplant and graft-versus-host disease during or after treatment.

Late effects that affect the immune system may increase the risk of very serious bacterial infections. These symptoms may be caused by infection:

• Redness, swelling, or warmth of a part of the body.
• Pain that is in one part of the body, such as the eye, ear, or throat.
• Fever.

An infection may cause other symptoms that depend on the part of the body affected. For example, a lung infection may cause a cough and thick mucus.

Taking daily antibiotics for at least 2 to 3 years after splenectomy or until at least 5 years of age for young children may be recommended. At the first sign of fever (temperature over 101.5°F or 38.5°C), it is important to have prompt medical care and be treated with antibiotics. Antibiotics should also be given before dental work to prevent infection.

In addition, children at risk should be vaccinated against the following:

• Pneumococcal disease (for children aged 10 years and older and more than 5 years after last dose).
• Meningococcal disease.
• Haemophilus influenzae type b (Hib) disease.

Talk to your child's doctor about whether other childhood vaccinations need to be repeated.

Musculoskeletal System

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

• Acute lymphoblastic leukemia (ALL).
• Bone cancer.
• Brain and spinal cord tumors.
• Osteosarcoma.
• Retinoblastoma.
• Soft tissue sarcoma.
• Wilms tumor.
• Cancers treated with a stem cell transplant.

Radiation therapy can stop or slow the growth of bone. The type of bone and joint late effect depends on the part of the body that received radiation therapy. Radiation therapy may cause any of the following:

• Changes in the way the face or skull form, especially when treatment is given to children before age 5 or when high-dose radiation is given.
• Tooth or sinus problems.
• Short stature (being shorter than normal).
• Scoliosis (curving of the spine) or kyphosis (rounding of the spine).
• One arm or leg is shorter than the other arm or leg.
• Osteoporosis (weak or thin bones that can break easily).

Amputation or limb-sparing surgery to remove the cancer and prevent it from coming back may cause late effects depending on where the tumor was, age of the patient, and type of surgery. Health problems after amputation or limb-sparing surgery may include:

• Having problems with activities of daily living.
• Not being able to be as active as normal.
• Chronic pain or infection.
• Problems with the way prosthetics fit or work.
• Broken bone.
• One arm or leg is shorter than the other.

Studies show no difference in quality of life in childhood cancer survivors who had amputation compared to those who had limb-sparing surgery.

Risk may be increased in childhood cancer survivors who receive anticancer therapy that includes methotrexate or corticosteroids or glucocorticoids such as dexamethasone. Drug therapy may cause any of the following:

• Osteoporosis (weak or thin bones that can break easily).
• Osteonecrosis (one or more parts of a bone dies from a lack of blood flow), especially in the hip or knee.

A stem cell transplant can affect the bone and joints in different ways:

• Total-body irradiation (TBI) given as part of a stem cell transplant may affect the body's ability to make growth hormone and cause short stature (being shorter than normal).
• Osteochondroma (a benign tumor of the long bones) may form.
• Chronic graft-versus-host disease may occur after a stem cell transplant and cause joint contractures (tightening of the muscles that causes the joint to shorten and become very stiff).

These symptoms may be caused by bone and joint late effects:

• Swelling over a bone or bony part of the body.
• Pain in a bone or joint.
• Redness or warmth over a bone or joint.
• Joint stiffness or trouble moving normally.
• A bone that breaks for no known reason or breaks easily.
• Short stature (being shorter than normal).
• One side of the body looks higher than the other side or the body tilts to one side.
• Always sitting or standing in a slouching position or having the appearance of a hunched back.

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

These and other tests and procedures may be used to detect or diagnose bone and joint 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, past illnesses and treatments will also be taken.
• Bone mineral density scan: An imaging test that measures bone density (the amount of bone mineral in a certain amount of bone) by passing x-rays with two different energy levels through the bone. It is used to diagnose osteoporosis (weak or thin bones that can break easily). Also called BMD scan, DEXA, DEXA scan, dual energy x-ray absorptiometric scan, dual x-ray absorptiometry, and DXA.
• X-ray: An x-ray is a type of energy beam that can go through the body and onto film, making a picture of areas inside the body, such as bones.

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

Treatment for these and other childhood cancers may cause obesity:

• Acute lymphoblastic leukemia (ALL).
• Brain tumors, especially craniopharyngiomas.
• Cancers treated with total-body irradiation (TBI) as part of a stem cell transplant.

Obesity may be measured by weight, body mass index, percent of body fat, or size of the abdomen (belly fat).

The risk of obesity increases after treatment with the following:

• Radiation therapy to the brain.
• Surgery that damages the hypothalamus or pituitary gland.

The following may also increase the risk of obesity:

• Being a young age at the time of treatment (the younger the child, the greater the risk).
• Being female.
• Not doing enough physical activity to stay at a healthy body weight.

These and other tests and procedures may be used to detect or diagnose obesity:

• 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.
• Blood chemistry studies: A procedure in which a blood sample is checked to measure the amounts of certain substances, such as glucose, released into the blood by organs and tissues in the body. An unusual (higher or lower than normal) amount of a substance can be a sign of disease in the organ or tissue that makes it.
• Lipid profile studies: A procedure in which a blood sample is checked to measure the amounts of triglycerides, cholesterol, and low- and high-density lipoprotein cholesterol in the blood.

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

Metabolic syndrome is a group of medical conditions that includes having too much fat around the abdomen and two of the following:

• High blood pressure.
• High levels of triglycerides and low levels of high-density lipoprotein cholesterol in the blood.
• High levels of glucose (sugar) in the blood.

Treatment for these and other childhood cancers may cause metabolic syndrome to occur later in life:

• Acute lymphoblastic leukemia (ALL).
• Cancers treated with a stem cell transplant.

Childhood cancer survivors who received radiation to the brain or had a stem cell transplant are at risk for metabolic syndrome. Metabolic syndrome may cause low levels of growth hormone, which helps promote growth and control metabolism. This may cause the survivor to be shorter than normal.

Neuroendocrine System

The neuroendocrine system is the nervous system and the endocrine system working together. Certain nerves (the nervous system) cause hormones to be released (the endocrine system) into the blood. Treatment for these and other childhood cancers may cause neuroendocrine late effects:

• Acute lymphoblastic leukemia (ALL).
• Brain and spinal cord tumors.
• Nasopharyngeal cancer.
• Cancers treated with total-body irradiation (TBI) before a stem cell transplant.

Childhood cancer survivors are at risk for neuroendocrine late effects. These effects are caused by radiation therapy to the brain in the area of the hypothalamus. The hypothalamus controls the way hormones are made by the pituitary gland. Radiation therapy may be given to treat cancer near the hypothalamus or as total-body irradiation (TBI) before a stem cell transplant.

Childhood cancer survivors who were treated with radiation to the brain may have low levels of any of the following pituitary hormones:

• Adrenocorticotropic hormone (controls the making of glucocorticoids).
• Growth hormone (helps promote growth and control metabolism).
• Prolactin (controls the making of breast milk).
• Thyroid-stimulating hormone (controls the making of thyroid hormones).
• Luteinizing hormone (controls reproduction).
• Follicle-stimulating hormone (controls reproduction).

Neuroendocrine late effects include the following:

• Adrenocorticotropin deficiency: A low level of adrenocorticotropic hormone is an uncommon late effect. It may occur after low doses of radiation therapy and rarely, after chemotherapy. Symptoms of adrenocorticotropin deficiency may not be severe and may not be noticed. Symptoms include weight loss for no known reason, not feeling hungry, nausea, vomiting, low blood pressure, and feeling tired.
• Growth hormone deficiency: A low level of growth hormone is the most common side effect of radiation to the brain in childhood cancer survivors. The higher the radiation dose and the longer the time since treatment, the greater the risk of this late effect. A low level of growth hormone in childhood results in adult height that is shorter than normal. Low growth hormone levels may be treated with growth hormone replacement therapy.
• Hyperprolactinemia: A high level of the hormone prolactin may occur after a high dose of radiation to the brain or surgery that affects part of the pituitary gland. A high level of prolactin may cause the following:
  • Puberty at a later age than normal.
  • Flow of breast milk in a woman who is not pregnant or breast-feeding.
  • Less frequent or no menstrual periods or menstrual periods with a very light flow.
  • Hot flashes (in women).
  • Inability to become pregnant.
  • Inability to have an erection needed for sexual intercourse.
  • Lower sex drive (in men and women).
• Hypothyroidism: A low level of thyroid hormone may develop very slowly over time. Sometimes the symptoms of hypothyroidism are not noticed. Low thyroid hormone levels may cause slow growth and delayed puberty as well as other symptoms.
• Luteinizing hormone or follicle-stimulating hormone deficiency: Low levels of these hormones can cause different health problems. The type of problem depends on the radiation dose. A high dose of radiation may cause infertility. A low dose of radiation may cause puberty to occur at an earlier age than normal.

These and other tests and procedures may be used to detect or diagnose thyroid 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.
• Blood chemistry study: A procedure in which a blood sample is checked to measure the amounts of certain substances, such as glucose, released into the blood by organs and tissues in the body. An unusual (higher or lower than normal) amount of a substance can be a sign of disease in the organ or tissue that makes it.
• Blood hormone studies: A procedure in which a blood sample is checked to measure the amounts of certain hormones released into the blood by organs and tissues in the body. An unusual (higher or lower than normal) amount of a substance can be a sign of disease in the organ or tissue that makes it. The blood may be checked for abnormal levels of follicle-stimulating hormone, luteinizing hormone, estradiol, testosterone, or free thyroxine (T4).
• Lipid profile studies: A procedure in which a blood sample is checked to measure the amounts of triglycerides, cholesterol, and low- and high-density lipoprotein cholesterol in the blood.

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

Reproductive System

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

• Acute lymphoblastic leukemia (ALL).
• Hodgkin lymphoma.
• Osteosarcoma.
• Sarcoma.
• Testicular cancer.
• Wilms tumor.
• Cancers treated with total-body irradiation (TBI) before a stem cell transplant.

The risk of health problems that affect the testicles increases after treatment with one or more of the following:

• Surgery, such as the removal of a testicle, part of the prostate, or lymph nodes in the abdomen.
• Chemotherapy with alkylating agents, such as cyclophosphamide, procarbazine, and ifosfamide.
• Radiation therapy to the abdomen or pelvis.
• Total-body irradiation (TBI) before a stem cell transplant.

Late effects of the testicles include the following:

• Low sperm count: A zero sperm count or a low sperm count may be temporary or permanent. This depends on the radiation dose and schedule, the area of the body treated, and the age when treated.
• Infertility: The inability to father a child.
• Retrograde ejaculation: Very little or no semen comes out of the penis during orgasm.

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

• Hodgkin lymphoma.
• Cancers treated with total-body irradiation (TBI) before a stem cell transplant.

The risk of ovarian late effects may be increased after treatment with any of the following:

• Chemotherapy with alkylating agents, such as cyclophosphamide, mechlorethamine, cisplatin, ifosfamide, lomustine, and especially procarbazine.
• Radiation therapy to the abdomen or pelvis. In survivors who had radiation to the abdomen, the damage to the ovaries depends on the radiation dose, age at the time of treatment, and whether all or part of the abdomen received radiation.
• Radiation therapy to the abdomen or pelvis together with alkylating agents.
• Radiation therapy to the brain and spinal cord.
• Total-body irradiation (TBI) before a stem cell transplant. In survivors who had TBI, the damage to the ovaries is greatest in survivors who had not reached puberty at the time of treatment.

The risk may also be greater in survivors who were age 13 to 20 years at the time of treatment.

Ovarian late effects include the following:

• Early menopause, especially in women who were treated with both an alkylating agent and radiation therapy to the abdomen.
• Changes in menstrual periods.
• Infertility (inability to conceive a child).
• Puberty does not begin.

These symptoms may be caused by ovarian late effects:

• Irregular or no menstrual periods.
• Hot flashes.
• Night sweats.
• Trouble sleeping.
• Mood changes.
• Lowered sex drive.
• Vaginal dryness.
• Inability to conceive a child.
• Sex traits, such as developing arm, pubic, and leg hair or having the breasts enlarge, do not occur at puberty.
• Heart disease.
• Osteoporosis (weak or thin bones that can break easily).

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

The risk of infertility increases after treatment with the following:

• In boys, treatment with radiation therapy to the testicles.
• In girls, treatment with radiation therapy to the pelvis, including the ovaries and uterus.
• Radiation therapy to brain and spinal cord or lower back.
• Total-body irradiation (TBI) before a stem cell transplant.
• Chemotherapy with alkylating agents, such as cyclophosphamide and procarbazine.
• Surgery, such as the removal of a testicle or an ovary or lymph nodes in the abdomen.

Late effects on pregnancy include increased risk of the following:

• High blood pressure.
• Miscarriage.
• Low birth-weight babies.
• Early labor and/or delivery.
• The fetus is not in the right position for birth (for example, the foot or buttock is in position to come out before the head).

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.
• Testicular sperm extraction (the removal of a small amount of tissue containing sperm from the testicle).
• Intracytoplasmic sperm injection (an egg is fertilized with one sperm that is injected into the egg outside the body).
• In vitro fertilization (IVF) (eggs and sperm are placed together in a container, giving the sperm the chance to enter an egg).

Respiratory System

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

• Hodgkin lymphoma.
• Wilms tumor.
• Cancers treated with total-body irradiation (TBI) or certain chemotherapy drugs before a stem cell transplant.

The risk of health problems that affect the lungs increases after treatment with the following:

• Surgery to remove all or part of the lung.
• Certain chemotherapy drugs, such as bleomycin, busulfan, lomustine, dactinomycin, or doxorubicin.
• Radiation therapy to the chest.
• Total-body irradiation (TBI) or certain chemotherapy drugs before a stem cell transplant.

The following types of treatment are most likely to cause late effects:

• Chemotherapy drugs that are more likely to damage the lung.
• Higher doses of radiation.
• Radiation to a large part of the lung.
• Radiation that is not given in small, divided daily doses.

The risk of lung late effects may be increased in childhood cancer survivors who have a history of the following:

• Infections or graft-versus-host disease after a stem cell transplant.
• Lung disease, such as asthma, before cancer treatment.
• Cigarette smoking.

Lung late effects include the following:

• Radiation pneumonitis (inflamed lung caused by radiation therapy).
• Pulmonary fibrosis (the build-up of scar tissue in the lung).
• Lung disease.

These symptoms may be caused by lung late effects:

• Dyspnea (shortness of breath), especially when being active.
• Wheezing when you breathe.
• Fever.
• Dry cough.
• Congestion (a feeling of fullness in the lungs from extra mucus).
• Feeling tired.
• Weight loss for no known reason.

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

Lung late effects in childhood cancer survivors may occur slowly over time and or there may be no symptoms. Sometimes lung damage can be detected only by imaging or pulmonary function testing. Lung late effects may improve over time.

These and other tests and procedures may be used to detect or diagnose lung 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.
• Chest x-ray: An x-ray of the organs and bones inside the chest. An x-ray is a type of energy beam that can go through the body and onto film, making a picture of areas inside the body.
• Pulmonary function test (PFT): A test to see how well the lungs are working. It measures how much air the lungs can hold and how quickly air moves into and out of the lungs. It also measures how much oxygen is used and how much carbon dioxide is given off during breathing. This is also called lung function test.

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

Childhood cancer survivors with lung late effects should take care to protect their health, including:

• Not smoking.
• Quitting smoking.
• Getting vaccines for flu and pneumococcus.

Senses

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

• Brain tumors.
• Head and neck cancers.
• Neuroblastoma.
• Retinoblastoma.

The risk of hearing loss may be increased in childhood cancer survivors after treatment with either of the following:

• Certain chemotherapy drugs, such as cisplatin or high-dose carboplatin.
• Radiation therapy to the brain.

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) or received radiation therapy to the brain and chemotherapy at the same time.

These symptoms may be caused by hearing late effects:

• Hearing loss.
• Ringing in the ears.
• Feeling dizzy.
• Too much hardened wax in the ear.

Hearing loss may occur slowly over time or may occur several months or years after treatment ends. Other conditions may cause the same symptoms. Talk to your doctor if you have any of these problems.

These and other tests and procedures may be used to detect or diagnose hearing 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.
• Otoscopic exam: An exam of the ear. An otoscope is used to look at the ear canal and the eardrum to check for signs of infection or hearing loss. Sometimes the otoscope has a plastic bulb that is squeezed to release a small puff air into the ear canal. In a healthy ear, the eardrum will move. If there is fluid behind the eardrum, it will not move.
• Hearing test: A hearing test can be done in different ways depending on the child's age. The test is done to check if the child can hear soft and loud sounds and low- and high-pitched sounds. Each ear is checked separately. The child may also be asked if he or she can hear the high-pitched hum of a tuning fork when it is placed behind the ear or on the forehead.

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

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

• Retinoblastoma, rhabdomyosarcoma, and other tumors of the eye.
• Brain tumors.
• Head and neck cancers.
• Cancers treated with total-body irradiation (TBI) before a stem cell transplant.

The risk of eye problems or vision loss may be increased in childhood cancer survivors after treatment with any of the following:

• Radiation therapy to the brain, eye, or eye socket.
• Surgery to remove the eye.
• Total-body irradiation (TBI) as part of a stem cell transplant.
• Certain chemotherapy drugs, such as busulfan.
• Corticosteroids.
• Stem cell transplant and a history of chronic graft-versus-host disease.

Eye late effects include the following:

• Having a small eye socket that affects the shape of the child’s face as it grows.
• Loss of vision.
• Vision problems, such as cataracts or glaucoma.
• Not being able to make tears.
• Damage to the optic nerve and retina.
• Eyelid tumors.

These symptoms may be caused by eye and vision late effects:

• Changes in vision, such as:
  • Not being able to see objects that are close.
  • Not being able to see objects that are far away.
  • Double vision.
  • Cloudy or blurred vision.
  • Colors seem faded.
  • Seeing a glare or halo around lights at night.
• Dry eyes that may feel like they are itchy, burning, or swollen, or like there is something in the eye.
• Eye pain.
• Eye redness.
• Nausea.
• Having a growth on the eyelid.

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

These and other tests and procedures may be used to detect or diagnose eye and vision late effects:

• Eye exam with dilated pupil: An exam of the eye in which the pupil is dilated (widened) with medicated eye drops to allow the doctor to look through the lens and pupil to the retina. The inside of the eye, including the retina and the optic nerve, is checked using an instrument that makes a narrow beam of light. This is sometimes called a slit-lamp exam. The doctor may take pictures over time to keep track of changes in the size of the tumor and how fast it is growing.
• Indirect ophthalmoscopy: An exam of the inside of the back of the eye using a small magnifying lens and a light.

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

Urinary System

The risk of health problems that affect the kidney increases after treatment with the following:

• Chemotherapy drugs including cisplatin, carboplatin, ifosfamide and methotrexate.
• Radiation therapy to the middle of the back.
• Surgery to remove part or all of a kidney.
• Stem cell transplant.

The following may also increase the risk of kidney late effects:

• Having cancer in both kidneys.
• Age at the time of treatment. Older children treated with cisplatin and carboplatin are at greater risk. Younger children (5 years and younger) treated with ifosfamide are at greater risk.
• Having a genetic syndrome that increases the risk of kidney problems, such as Denys-Drash syndrome or WAGR syndrome.
• Having an abnormal genitourinary system (in men).

Kidney late effects include the following:

• Damage to the parts of the kidney that filter and clean the blood.
• Damage to the parts of the kidney that remove extra water from the blood.
• Loss of electrolytes, such as magnesium, calcium, or potassium, from the body.
• Hypertension (high blood pressure).

These symptoms may be caused by kidney late effects:

• Feeling the need to urinate without being able to do so.
• Frequent urination (especially at night).
• Trouble urinating.
• Feeling very tired.
• Swelling of the legs, ankles, feet, face, or hands.
• Itchy skin.
• Nausea or vomiting.
• A metal-like taste in the mouth or bad breath.
• Headache.

Sometimes there are no symptoms in the early stages. Symptoms may appear as damage to the kidney continues over time. Other conditions may cause the same symptoms. Talk to your doctor if you have any of these problems.

These and other tests and procedures may be used to detect or diagnose kidney 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.
• Blood chemistry study: A procedure in which a blood sample is checked to measure the amounts of certain substances, such as magnesium, calcium, and potassium, released into the blood by organs and tissues in the body. An unusual (higher or lower than normal) amount of a substance may be a sign of kidney disease.
• Complete blood count (CBC): A procedure in which a sample of blood is drawn and checked for the following:
  • The number of red blood cells, white blood cells, and platelets.
  • The amount of hemoglobin (the protein that carries oxygen) in the red blood cells.
  • The portion of the blood sample made up of red blood cells.
• Urinalysis: A test to check the color of urine and its contents, such as sugar, protein, red blood cells, and white blood cells.
• Twenty-four-hour urine test: A test in which urine is collected for 24 hours to measure the amounts of certain substances. An unusual (higher or lower than normal) amount of a substance, such as protein, urea nitrogen, or creatinine, can be a sign of disease in the organ or tissue that makes it.
• Ultrasound exam: A procedure in which high-energy sound waves (ultrasound) are bounced off internal tissues or organs, such as the kidney, and make echoes. The echoes form a picture of body tissues called a sonogram. The picture can be printed to be looked at later.

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

Childhood cancer survivors who had all or part of their kidney removed should talk to their doctor about the following:

• Whether it is safe to play sports that have a high risk of heavy contact or impact such as football or hockey.
• Bicycle safety and avoiding handlebar injuries.
• Wearing a seatbelt around the hips, not the waist.

The risk of health problems that affect the bladder increases after treatment with the following:

• Surgery to remove all or part of the bladder.
• Surgery to the pelvis or brain.
• Certain chemotherapy drugs, such as cyclophosphamide or ifosfamide.
• Radiation therapy to areas near the bladder or urinary tract.

Bladder late effects include the following:

• Hemorrhagic cystitis (inflammation of the inside of the bladder wall, which leads to bleeding).
• Thickening of the bladder wall.
• Trouble emptying the bladder.
• Incontinence.
• A blockage in the kidney, ureter, bladder, or urethra.

These symptoms may be caused by bladder late effects:

• Feeling the need to urinate without being able to do so.
• Frequent urination (especially at night).
• Trouble urinating.
• Feeling like the bladder does not empty completely after urination.
• Swelling of the legs, ankles, feet, face, or hands.
• Little or no bladder control.
• Blood in the urine.

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

These and other tests and procedures may be used to detect or diagnose bladder 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.
• Blood chemistry study: A procedure in which a blood sample is checked to measure the amounts of certain substances, such as magnesium, calcium, and potassium, released into the blood by organs and tissues in the body. An unusual (higher or lower than normal) amount of a substance may be a sign of bladder problems.
• Urinalysis: A test to check the color of urine and its contents, such as sugar, protein, red blood cells, and white blood cells.
• Ultrasound exam: A procedure in which high-energy sound waves (ultrasound) are bounced off internal tissues or organs, such as the kidney and bladder, and make echoes. The echoes form a picture of body tissues called a sonogram. The picture can be printed to be looked at later.

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

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:

• Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers
• Late Effects Directory of Services

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

• What You Need to Know About™ Cancer
• Childhood Cancers
• CureSearch for Children's Cancer
• Late Effects of Treatment for Childhood Cancer
• Adolescents and Young Adults with Cancer
• Young People with Cancer: A Handbook for Parents
• Care for Children and Adolescents with Cancer
• Understanding Cancer Series: Cancer
• Cancer Staging
• Coping with Cancer: Supportive and Palliative Care
• Cancer Library
• Information for Survivors/Caregivers/Advocates

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Search the NCI Web site

The NCI Web site provides online access to information on cancer, clinical trials, and other Web sites and organizations that offer support and resources for cancer patients and their families. For a quick search, use the search box in the upper right corner of each Web page. The results for a wide range of search terms will include a list of "Best Bets," editorially chosen Web pages that are most closely related to the search term entered.

There are also many other places to get materials and information about cancer treatment and services. Hospitals in your area may have information about local and regional agencies that have information on finances, getting to and from treatment, receiving care at home, and dealing with problems related to cancer treatment.

Find Publications

The NCI has booklets and other materials for patients, health professionals, and the public. These publications discuss types of cancer, methods of cancer treatment, coping with cancer, and clinical trials. Some publications provide information on tests for cancer, cancer causes and prevention, cancer statistics, and NCI research activities. NCI materials on these and other topics may be ordered online or printed directly from the NCI Publications Locator. These materials can also be ordered by telephone from the Cancer Information Service toll-free at 1-800-4-CANCER (1-800-422-6237).

Changes to This Summary (01/11/2012)

The PDQ cancer information summaries are reviewed regularly and updated as new information becomes available. This section describes the latest changes made to this summary as of the date above.

This summary was completely reformatted and some content was added.

About PDQ

PDQ is a comprehensive cancer database available on NCI's Web site.

PDQ is the National Cancer Institute's (NCI's) comprehensive cancer information database. Most of the information contained in PDQ is available online at NCI's Web site. PDQ is provided as a service of the NCI. The NCI is part of the National Institutes of Health, the federal government's focal point for biomedical research.

PDQ contains cancer information summaries.

The PDQ database contains summaries of the latest published information on cancer prevention, detection, genetics, treatment, supportive care, and complementary and alternative medicine. Most summaries are available in two versions. The health professional versions provide detailed information written in technical language. The patient versions are written in easy-to-understand, nontechnical language. Both versions provide current and accurate cancer information.

The PDQ cancer information summaries are developed by cancer experts and reviewed regularly.

Editorial Boards made up of experts in oncology and related specialties are responsible for writing and maintaining the cancer information summaries. The summaries are reviewed regularly and changes are made as new information becomes available. The date on each summary ("Date Last Modified") indicates the time of the most recent change.

PDQ also contains information on clinical trials.

A clinical trial is a study to answer a scientific question, such as whether one treatment is better than another. Trials are based on past studies and what has been learned in the laboratory. Each trial answers certain scientific questions in order to find new and better ways to help cancer patients. During treatment clinical trials, information is collected about the effects of a new treatment and how well it works. If a clinical trial shows that a new treatment is better than one currently being used, the new treatment may become "standard." In the United States, about two-thirds of children with cancer are treated in a clinical trial at some point in their illness.

Listings of clinical trials are included in PDQ and are available online at NCI's Web site. Descriptions of the trials are available in health professional and patient versions. For additional help in locating a childhood cancer clinical trial, call the Cancer Information Service at 1-800-4-CANCER (1-800-422-6237).

The PDQ database contains listings of groups specializing in clinical trials.

The Children's Oncology Group (COG) is the major group that organizes clinical trials for childhood cancers in the United States. Information about contacting COG is available on the NCI Web site or from the Cancer Information Service at 1-800-4-CANCER (1-800-422-6237).

Sponsors:
The following organisations have financed parts of our PhD research project on improving the quality of online cancer information.

• The Commission of the European Communities, Directorate General XIII by contract INCO 962100 (ARGONAUTA)
• Health on the Net Foundation (Geneva)
• Landesregierung NRW (im Rahmen von HSP III)

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This page was last modified on Thursday, 09-Feb-2012 12:45:03 CET