Late Effects of Treatment for Childhood Cancer (PDQ®)–Patient Version
General Information about Late Effects
KEY POINTS
- Late effects are health problems that occur months or years after treatment has ended.
- Late effects in childhood cancer survivors affect the body and mind.
- There are three important factors that affect the risk of late effects.
- The chance of having late effects increases over time.
- Regular follow-up care is very important for survivors of childhood cancer.
- Good health habits are also important for survivors of childhood cancer.
Late effects are health problems that occur months or years after treatment has ended.
The treatment of cancer may cause health problems for childhood cancer survivorsmonths or years after successful treatment has ended. Cancer treatments may harm the body's organs, tissues, or bones and cause health problems later in life. These health problems are called late effects.
Treatments that may cause late effects include the following:
Doctors are studying the late effects caused by cancer treatment. They are working to improve cancer 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 affect the body and mind.
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.
There are three important factors that affect the risk of late effects.
Many childhood cancer survivors will have late effects. The risk of late effects depends on factors related to the tumor, treatment, and patient. 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.
- Type of radiation therapy, 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.
- Chronic graft-versus-host disease.
- Patient-related factors
- The child's sex.
- Health problems the child had before being diagnosed with cancer.
- The child’s age and developmental stage when diagnosed and treated.
- Length of time since diagnosis and treatment.
- Changes in hormone levels.
- The ability of healthy tissue affected by cancer treatment to repair itself.
- Certain changes in the child's genes.
- Family history of cancer or other conditions.
- Health habits.
The chance of having late effects increases over time.
New treatments for childhood cancer have decreased the number of deaths from the primary cancer. Because childhood cancer survivors are living longer, they are having more late effects after cancer treatment. 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.
Regular follow-up care is very important for survivors of childhood cancer.
Regular follow-up by health professionals who are trained to find and treat 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. Follow-up care includes checking for signs and symptoms of late effects and health education on how to prevent or lessen late effects.
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 knows 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. It also helps doctors study the late effects of cancer treatments so that safer therapies for newly diagnosed children may be developed.
Good health habits are also important for survivors of childhood cancer.
The quality of life for 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 health problems related to treatment. Healthy behaviors may make late effects less severe and lower the risk of other diseases.
Second Cancers
KEY POINTS
- Childhood cancer survivors have an increased risk of a second cancer later in life.
- Certain genetic patterns or syndromes may increase the risk of a second cancer.
- Patients who have been treated for cancer need regular screening tests to check for a second cancer.
- The kind of test used to screen for a second cancer depends in part on the kind of cancer treatment the patient had in the past.
Childhood cancer survivors have an increased risk of a second cancer later in life.
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. Benign tumors (not cancer) may also occur.
Second cancers that occur after cancer treatment include the following:
Solid tumors that may appear more than 10 years after primary cancer diagnosis and treatment include the following:
- Breast cancer. There is an increased risk of breast cancer after high-dose chest radiation treatment for Hodgkin lymphoma. Patients treated with radiation above the diaphragm that does not include lymph nodes in the armpit have a lower risk of breast cancer.The treatment of cancer that has spread to the chest or lung with chest radiation may also increase the risk of breast cancer.There is also an increased risk of breast cancer in patients who were treated with alkylating agents and anthracyclines but not with chest radiation. The risk is highest in sarcoma and leukemia survivors.
- Thyroid cancer. Thyroid cancer may occur after neck radiation treatment for Hodgkin lymphoma, acute lymphocytic leukemia, or brain tumors; after radioactive iodinetherapy for neuroblastoma; or after total-body irradiation (TBI) as part of a stem cell transplant.
- Brain tumors. Brain tumors may occur after radiation treatment to the head and/or intrathecal chemotherapy using methotrexate for a primary brain tumor or for cancer that has spread to the brain or spinal cord, such as acute lymphocytic leukemia or non-Hodgkin lymphoma. When intrathecal chemotherapy using methotrexate and radiation treatment are given together, the risk of a brain tumor is even higher.
- Bone and soft tissue tumors. There is an increased risk of bone and soft tissue tumors after radiation treatment for retinoblastoma, Ewing sarcoma, and other cancers of the bone.Chemotherapy with anthracyclines or alkylating agents also increases the risk of bone and soft tissue tumors.
- Lung cancer. There is an increased risk of lung cancer after radiation treatment to the chest for Hodgkin lymphoma, especially in patients who smoke.
- Stomach, liver, or colorectal cancer. Stomach, liver, or colorectal cancer may occur after radiation treatment to the abdomen or pelvis. The risk increases with higher doses of radiation. There is also an increased risk of colorectal polyps.Treatment with chemotherapy alone or chemotherapy and radiation treatment combined also increases the risk of stomach, liver, or colorectal cancer.
- Nonmelanoma skin cancer (basal cell carcinoma or squamous cell carcinoma). There is an increased risk of nonmelanoma skin cancer after radiation treatment; it usually appears in the area where radiation was given. Being exposed to UV radiation may increase this risk. Patients who develop nonmelanoma skin cancer after radiation treatment have an increased chance of developing other types of cancers in the future. The risk of basal cell carcinoma is also increased after treatment with chemotherapy drugs, called vinca alkaloids, such as vincristine and vinblastine.
- Malignant melanoma. Malignant melanoma may occur after radiation or combination chemotherapy with alkylating agents and antimitotic drugs (such as vincristine and vinblastine). Survivors of Hodgkin lymphoma, hereditary retinoblastoma, soft tissue sarcoma, and gonadal tumors are more likely to be at a higher risk of having malignant melanoma. Malignant melanoma as a second cancer is less common than nonmelanoma skin cancer.
- Oral cavity cancer. Oral cavity cancer may occur after stem cell transplant and a historyof chronic graft-versus-host disease.
- Kidney cancer. There is an increased risk of kidney cancer after treatment for neuroblastoma, radiation treatment to the middle of the back, or chemotherapy such as cisplatin or carboplatin.
- Bladder cancer. Bladder cancer may occur after chemotherapy with cyclophosphamide.
Myelodysplastic syndrome and acute myeloid leukemia may appear less than 10 years after a primary cancer diagnosis of Hodgkin lymphoma, acute lymphoblastic leukemia, or sarcoma and treatment with chemotherapy that included 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.
Certain genetic patterns or syndromes may increase the risk of a second cancer.
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 cancer syndrome such as Li-Fraumeni syndrome. Problems with the way DNA is repaired in cells and the way anticancer drugs are used by the body may also affect the risk of second cancers.
Patients who have been treated for cancer need regular screening tests to check for a second cancer.
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 child's doctor does not necessarily think your child has cancer if he or she suggests a screening test. Screening tests are given when your child has no cancer symptoms. If a screening test result is abnormal, your child may need to have more tests done to find out if he or she has a second cancer. These are called diagnostic tests.
The kind of test used to screen for a second cancer depends in part on the kind of cancer treatment the patient had in the past.
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 received radiation therapy, the following tests and procedures may be used to check for skin, breast, or colorectal cancer:
- 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.
- 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 a higher dose of radiation therapy to the chest do a monthly breast self-exam beginning at puberty until age 25 years. Women who were treated with a lower dose of radiation to the chest may not need to begin checking for breast cancer at puberty. Talk to your doctor about when you should begin breast self-exams.
- 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 a higher dose of radiation therapy to the chest have a clinical breast exam every year beginning at puberty until age 25 years. After age 25 years or 8 years after radiation treatments end (whichever is first), clinical breast exams are done every 6 months. Women who were treated with a lower dose of radiation to the chest may not need to begin checking for breast cancer at puberty. Talk to your doctor about when you should begin clinical breast exams.
- Mammogram: An x-ray of the breast. A mammogram may be done in women who had a higher dose of 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. Talk to your doctor about when you should begin to have mammograms to check for breast cancer.
- Breast MRI (magnetic resonance imaging): A procedure that uses a magnet, radio waves, and a computer to make a series of detailed pictures of the breast. This procedure is also called nuclear magnetic resonance imaging (NMRI). An MRI may be done in women who had a higher dose of 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. If you had radiation to the chest, talk to your doctor about whether you need an MRI of the breast to check for breast cancer.
- 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 a higher dose of 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. If you had radiation to the abdomen, pelvis, or spine, talk to your doctor about when you should begin to have a colonoscopies to check for colorectal cancer.
Cardiovascular System
KEY POINTS
- Heart and blood vessel late effects are more likely to occur after treatment for certain childhood cancers.
- Radiation to the chest and certain types of chemotherapy increase the risk of heart and blood vessel late effects.
- Late effects that affect the heart and blood vessels may cause certain health problems.
- Possible signs and symptoms of heart and blood vessel late effects include trouble breathing and chest pain.
- Certain tests and procedures are used to detect (find) and diagnose health problems in the heart and blood vessels.
- Health habits that promote a healthy heart and blood vessels are important for survivors of childhood cancer.
Heart and blood vessel late effects are more likely to occur after treatment for certain childhood cancers.
- Acute lymphoblastic leukemia (ALL).
- Acute myelogenous leukemia (AML).
- Brain and spinal cord tumors.
- Head and neck cancer.
- Hodgkin lymphoma.
- Non-Hodgkin lymphoma.
- Wilms tumor.
- Cancers treated with a stem cell transplant.
Radiation to the chest and certain types of chemotherapy increase the risk of heart and blood vessel late effects.
The risk of health problems involving the heart and blood vessels increases after treatment with the following:
- Radiation to the chest, spine, brain, neck, kidneys, or total-body irradiation (TBI) as part of a stem cell transplant. The risk of problems depends on the area of the body that was exposed to radiation, the amount of radiation given, and whether the radiation was given in small or large doses.
- Certain types of chemotherapy and the total dose of anthracycline given. Chemotherapy with anthracyclines such as doxorubicin, daunorubicin, idarubicin, and epirubicin, and with anthraquinones such as mitoxantrone increase the risk of heart and blood vessel problems. The risk of problems depends on the total dose of chemotherapy given and the type of drug used. It also depends on whether treatment with anthracyclines was given to a child younger than 13 years and whether a drug called dexrazoxane was given during treatment with anthracyclines. Dexrazoxane may lessen heart and blood vessel damage up to 5 years after treatment. Ifosfamide, methotrexate, and chemotherapy with platinum, such as carboplatin and cisplatin, may also cause heart and blood vessel late effects.
- Stem cell transplant.
- Nephrectomy (surgery to remove all or part of a kidney).
Childhood cancer survivors who were treated with radiation to the heart or blood vessels and certain types of chemotherapy are at greatest risk.
New treatments that decrease the amount of radiation given and use lower doses of chemotherapy or less harmful chemotherapy drugs may lessen the risk of heart and blood vessel late effects compared with older treatments.
The following may also increase the risk of heart and blood vessel late effects:
- Longer time since treatment.
- Having high blood pressure or other risk factors for heart disease, such as a family history of heart disease, being overweight, smoking, high cholesterol, or diabetes. When these risk factors are combined, the risk of late effects is even higher.
- Having lower than normal amounts of thyroid, growth, or sex hormones.
Late effects that affect the heart and blood vessels may cause certain health problems.
Childhood cancer survivors who received radiation or certain types of chemotherapy have an increased risk of late effects to the heart and blood vessels and related health problems. 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 one or more strokes.
- Carotid artery disease.
Possible signs and symptoms of heart and blood vessel late effects include trouble breathing and chest pain.
These and other signs and symptoms may be caused by heart and blood vessel late effects or by other conditions:
- Trouble breathing, especially when lying down.
- Heartbeat that is too slow, too fast, or different from the heart's normal rhythm.
- Chest pain or pain in the arm or leg.
- 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 or trouble speaking or understanding speech.
- Sudden trouble seeing with one or both eyes.
- Sudden trouble walking or feeling dizzy.
- Sudden loss of balance or coordination.
- Sudden severe headache for no known reason.
- Pain, warmth, or redness in one area of the arm or leg, especially the back of the lower leg.
Talk to your child's doctor if your child has any of these problems.
Certain tests and procedures are used to detect (find) and diagnose health problems in the heart and blood vessels.
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, high blood pressure, 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 check 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.
- CT scan (CAT scan): A procedure that makes a series of detailed pictures of areas inside the body, taken from different angles. The pictures are made by a computer linked to an x-ray machine. A dye may be injected into a vein or swallowed to help the organs or tissues show up more clearly. This procedure is also called computed tomography, computerized tomography, or computerized axial tomography. This procedure is done to check for blood clots.
- 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 child's doctor about whether your child needs to have tests and procedures to check for signs of heart and blood vessel late effects. If tests are needed, find out how often they should be done.
Health habits that promote a healthy heart and blood vessels are important for survivors of childhood cancer.
Childhood cancer survivors may lower the risk of heart and blood vessel late effects by having a healthy lifestyle, which includes:
- A healthy weight.
- A heart-healthy diet.
- Regular exercise.
- Not smoking.
Central Nervous System
KEY POINTS
- Brain and spinal cord late effects are more likely to occur after treatment for certain childhood cancers.
- Radiation to the brain increases the risk of brain and spinal cord late effects.
- Late effects that affect the brain and spinal cord may cause certain health problems.
- Possible signs and symptoms of brain and spinal cord late effects include headaches, loss of coordination, and seizures.
- Certain tests and procedures are used to detect (find) and diagnose health problems in the brain and spinal cord.
- Survivors of childhood cancer may have anxiety and depression related to their cancer.
- Some childhood cancer survivors have post-traumatic stress disorder.
- Adolescents who are diagnosed with cancer may have social problems later in life.
Brain and spinal cord late effects are more likely to occur after treatment for certain childhood cancers.
- Acute lymphoblastic leukemia (ALL).
- Brain and spinal cord tumors.
- Head and neck cancers, including retinoblastoma.
- Non-Hodgkin lymphoma.
- Osteosarcoma.
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:
- Radiation to the brain or spinal cord, especially high doses of radiation. This includes total-body irradiation given as part of a stem cell transplant.
- Intrathecal or intraventricular chemotherapy.
- Chemotherapy with high-dose methotrexate or cytarabine that can cross the blood-brain barrier (protective lining around the brain). This includes high-dose chemotherapy given as part of a stem cell transplant.
- 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 in childhood brain tumor survivors:
- Being about 5 years old or younger at the time of treatment.
- Being female.
- Having hydrocephalus and a shunt placed to removed the extra fluid from the ventricles.
- Having hearing loss.
- Having cerebellar mutism following surgery to remove the brain tumor. Cerebellar mutism includes not being able to speak, loss of coordination and balance, mood swings, being irritable, and having a high-pitched cry.
- Having a personal history of stroke.
- Seizures.
Central nervous system late effects are also affected by where the tumor has formed in the brain and spinal cord.
Late effects that affect the brain and spinal cord may cause certain health problems.
Childhood cancer survivors who received radiation, certain types of chemotherapy, or surgery to the brain or spinal cord have an increased risk of late effects to the brain and spinal cord and related health problems. These include the following:
- Headaches.
- Loss of coordination and balance.
- Dizziness.
- 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. A second stroke may be more likely in survivors who received radiation to the brain, have a history of high blood pressure, or were older than 40 years when they had their first stroke.
- Daytime sleepiness.
- Hydrocephalus.
- Loss of bladder and/or bowel control.
- Cavernomas (clusters of abnormal blood vessels).
- Back pain.
Survivors may also have late effects that affect thinking, learning, memory, emotions, and behavior.
New ways of using more targeted and lower doses of radiation to the brain may lessen the risk of brain and spinal cord late effects.
Possible signs and symptoms of brain and spinal cord late effects include headaches, loss of coordination, and seizures.
These signs and symptoms may be caused by brain and spinal cord late effects or by other conditions:
- Headache that may go away after vomiting.
- Seizures.
- Loss of balance, lack of coordination, or trouble walking.
- Trouble speaking or swallowing.
- Trouble with having the eyes work together.
- Numbness, tingling, or weakness in the hands or feet.
- Being unable to bend the ankle to lift the 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 or trouble speaking or understanding speech.
- Sudden trouble seeing with one or both eyes.
- Sudden severe headache for no known reason.
Other signs and symptoms include the following:
- Problems with memory.
- Problems with paying attention.
- Trouble with solving problems.
- Trouble with organizing thoughts and tasks.
- Slower ability to learn and use new information.
- Trouble learning to read, write, or do math.
- Trouble coordinating movement between the eyes, hands, and other muscles.
- Delays in normal development.
- Social withdrawal or trouble getting along with others.
Talk to your child's doctor if your child has 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 complete 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 spoken and written language.
- Eye-hand coordination.
- Ability to organize information and tasks.
Talk to your child's doctor about whether your child needs to have tests and procedures to check for signs of brain and spinal cord late effects. If tests are needed, 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, having pain, the way they look, or the fear of cancer coming back. These and other factors may cause problems with personal relationships, education, employment, and health, and cause thoughts of suicide. Survivors with these problems may be less likely to live on their own as adults.
Follow-up exams for childhood cancer survivors should include screening and treatment for possible psychological distress, such as anxiety, depression, and thoughts of suicide.
Some childhood cancer survivors have post-traumatic stress disorder.
Being diagnosed and treated for a life-threatening disease may be traumatic. This traumamay 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.
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.
Adolescents who are diagnosed with cancer may have social problems later in life.
Adolescents who are diagnosed with cancer may reach fewer social milestones or reach them later in life than adolescents not diagnosed with cancer. Social milestones include having a first boyfriend or girlfriend, getting married, and having a child. They may also have trouble getting along with other people or feel like they are not liked by others their age.
Cancer survivors in this age group have reported being less satisfied with their health and their lives in general compared with others of the same age who did not have cancer. Adolescents and young adults who have survived cancer need special programs that give psychological, educational, and job support.
Digestive System
KEY POINTS
- Teeth and jaws
- Problems with the teeth and jaws are late effects that are more likely to occur after treatment for certain childhood cancers.
- Radiation to the head and neck and certain types of chemotherapy increase the risk of late effects to the teeth and jaws.
- Late effects that affect the teeth and jaws may cause certain health problems.
- Possible signs and symptoms of late effects of the teeth and jaws include tooth decay (cavities) and jaw pain.
- Certain tests and procedures are used to detect (find) and diagnose health problems in the mouth and jaws.
- Regular dental care is very important for survivors of childhood cancer.
- Digestive tract
- Digestive tract late effects are more likely to occur after treatment for certain childhood cancers.
- Radiation to the bladder, prostate, or testicles and certain types of chemotherapy increase the risk of digestive tract late effects.
- Late effects that affect the digestive tract may cause certain health problems.
- Possible signs and symptoms of digestive tract late effects include abdominal pain and diarrhea.
- Certain tests and procedures are used to detect (find) and diagnose health problems in the digestive tract.
- Liver and bile ducts
- Liver and bile duct late effects are more likely to occur after treatment for certain childhood cancers.
- Certain types of chemotherapy and radiation to the liver or bile ducts increase the risk of late effects.
- Late effects that affect the liver and bile ducts may cause certain health problems.
- Possible signs and symptoms of liver and bile duct late effects include abdominal pain and jaundice.
- Certain tests and procedures are used to detect (find) and diagnose health problems in the liver and bile duct.
- Health habits that promote a healthy liver are important for survivors of childhood cancer.
- Pancreas
- Radiation therapy increases the risk of pancreatic late effects.
- Late effects that affect the pancreas may cause certain health problems.
- Possible signs and symptoms of pancreatic late effects include frequent urination and being thirsty.
- Certain tests and procedures are used to detect (find) and diagnose health problems in the pancreas.
Teeth and jaws
Problems with the teeth and jaws are late effects that are more likely to occur after treatment for certain childhood cancers.
Treatment for these and other childhood cancers may cause the late effect of problems with teeth and jaws:
- Head and neck cancers.
- Hodgkin lymphoma.
- Neuroblastoma.
- Leukemia that spread to the brain and spinal cord.
- Nasopharyngeal cancer.
- Brain tumors.
- Cancers treated with a stem cell transplant.
Radiation to the head and neck and certain types of chemotherapy increase the risk of late effects to the teeth and jaws.
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, especially with higher doses of alkylating agents such as cyclophosphamide.
- Surgery in the head and neck area.
Risk is also increased in survivors who were younger than 5 years at the time of treatment because their permanent teeth had not fully formed.
Late effects that affect the teeth and jaws may cause certain health problems.
Teeth and jaw late effects and related health problems include the following:
Possible signs and symptoms of late effects of the teeth and jaws include tooth decay (cavities) and jaw pain.
These and other signs and symptoms may be caused by late effects of the teeth and jaws or by other conditions:
- Teeth are small or do not have a normal shape.
- Missing permanent teeth.
- Permanent teeth come in at a later than normal age.
- Teeth have less enamel than normal.
- More tooth decay (cavities) and gum disease than normal.
- Dry mouth.
- Trouble chewing, swallowing, and speaking.
- Jaw pain.
- Jaws do not open and close the way they should.
Talk to your child's doctor if your child has any of these problems.
Certain tests and procedures are used to detect (find) and diagnose health problems in the mouth and jaws.
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 child's doctor about whether your child needs to have tests and procedures to check for signs of teeth and jaw late effects. If tests are needed, find out how often they should be done.
Regular dental care is very important for survivors of childhood cancer.
Doctors suggest that survivors of childhood cancer have a dental check-up and a cleaning and fluoride treatment every 6 months. Children who had radiation therapy to the oral cavity may also see an orthodontist or an otolaryngologist. If lesions are present in the mouth, a biopsy may be needed.
Digestive tract
Digestive tract late effects are more likely to occur after treatment for certain childhood cancers.
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.
- Non-Hodgkin lymphoma.
- Germ cell tumors.
- Neuroblastoma.
- Wilms tumor.
Radiation to the bladder, prostate, or testicles and certain types of chemotherapy increase the risk of digestive tract late effects.
The risk of health problems that affect the digestive tract increases after treatment with the following:
- Radiation therapy to the abdomen or areas near the abdomen, such as the esophagus, bladder, prostate, or testicles, 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 higher doses of radiation therapy or receiving chemotherapy such as dactinomycin or anthracyclines together with radiation therapy may increase this risk.
- Abdominal surgery or pelvic surgery to remove the bladder.
- Chemotherapy with alkylating agents such as cyclophosphamide, procarbazine, and ifosfamide, or with platinum agents such as cisplatin or carboplatin, or with anthracyclines such as doxorubicin, daunorubicin, idarubicin, and epirubicin.
- Stem cell transplant.
The following may also increase the risk of digestive tract late effects:
- Older age at diagnosis or when treatment begins.
- Treatment with both radiation therapy and chemotherapy.
- A history of chronic graft-versus-host disease.
Late effects that affect the digestive tract may cause certain health problems.
Digestive tract late effects and related health problems include the following:
- A narrowing of the esophagus or intestine.
- The muscles of the esophagus do not work well.
- Reflux
- Diarrhea, constipation, fecal incontinence, or blocked bowel.
- Bowel perforation (a hole in the intestine).
- Inflammation of the intestines.
- Death of part of the intestine.
- Intestine is not able to absorb nutrients from food.
Possible signs and symptoms of digestive tract late effects include abdominal pain and diarrhea.
These and other signs and symptoms may be caused by digestive tract late effects or by other conditions:
Talk to your child's doctor if your child has any of these problems.
Certain tests and procedures are used to detect (find) and diagnose health problems in the digestive tract.
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.
- 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.
- 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.
- 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.
Talk to your child's doctor about whether your child needs to have tests and procedures to check for signs of digestive tract late effects. If tests are needed, find out how often they should be done.
Liver and bile ducts
Liver and bile duct late effects are more likely to occur after treatment for certain childhood cancers.
- Liver cancer.
- Wilms tumor.
- Acute lymphoblastic leukemia (ALL).
- Cancers treated with a stem cell transplant.
Certain types of chemotherapy and radiation to the liver or bile ducts increase the risk of late effects.
The risk of liver or bile duct late effects may be increased in childhood cancer survivors treated with one of the following:
- Surgery to remove part of the liver or a liver transplant.
- Chemotherapy that includes high-dose cyclophosphamide as part of a stem cell transplant.
- Chemotherapy 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, such as doxorubicin or dactinomycin, was given together with radiation therapy.
- Stem cell transplant (and a history of chronic graft-versus-host disease).
Late effects that affect the liver and bile ducts may cause certain health problems.
Liver and bile duct late effects and related health problems include the following:
- Liver doesn’t work the way it should or stops working.
- Gallstones.
- Benign liver lesions.
- 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.
- Fatty liver with insulin resistance (a condition in which the body makes insulin but cannot use it well).
- Tissue and organ damage from the buildup of extra iron after having many blood transfusions.
Possible signs and symptoms of liver and bile duct late effects include abdominal pain and jaundice.
These and other signs and symptoms may be caused by liver and bile duct late effects or by other conditions:
- Weight gain or weight loss.
- Swelling of the abdomen.
- Nausea and vomiting.
- Pain in the abdomen. Pain may occur near the ribs, often on the right side, or 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.
- Feeling tired or weak.
Talk to your child's doctor if your child has any of these problems.
Sometimes there are no signs or symptoms of liver or bile duct late effects and treatment may not be needed.
Certain tests and procedures are used to detect (find) and diagnose health problems in the liver and bile duct.
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 For example, there may be a higher level of bilirubin, alanine aminotransferase (ALT), and aspartate aminotransferase (AST) 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 a blood transfusion before 1972 should have a screening test for hepatitis B. Patients who had a blood transfusion before 1993 should have a screening test 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.
- Biopsy: The removal of cells or tissues from the liver so they can be viewed under a microscope to check for signs of a fatty liver.
Talk to your child's doctor about whether your child needs to have tests and procedures to check for signs of liver or bile duct late effects. If tests are needed, find out how often they should be done.
Health habits that promote a healthy liver are important for survivors of childhood cancer.
Childhood cancer survivors with liver late effects should take care to protect their health, including:
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