Overview
Psychological Adjustment
Families
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Changes to This Summary (10/02/2008)
Questions or Comments About This Summary
About PDQ

Overview

Key Points for This Section

The goal of supportive care is to improve the quality of life for young cancer patients and their families. Cancer in children is different from cancer in adults. Children of different ages need different treatment and support. A child's circle of family and friends may be larger than it usually is for adults. Most decisions about care will be made by the child's parents or guardians.

Note: Information about physical adjustment to treatment, problems with physical and cognitive development, and life after cancer treatment will be added to this summary in the future.

The goal of supportive care is to improve the quality of life for young cancer patients and their families.

Most children with cancer can be cured. However, cancer treatment for young patients can cause unwanted side effects and other problems during and after treatment. Early treatment of cancer symptoms and the side effects of therapy helps patients feel better, stay stronger, and cope with life after cancer. Supportive care improves the patient's physical, psychological, social, and spiritual quality of life.

Supportive care is given to children of all ages, including infants, children, adolescents, and young adults.

Cancer in children is different from cancer in adults.

Cancer in children and young adults is different from cancer that develops later in life. Childhood cancers usually do not act like adult cancers and are not treated the same way:

• Treatment

  In general, treatments for childhood cancer use higher doses of chemotherapy and radiation than is used for adults. These treatments may also be given over a shorter amount of time than in adults. This is because children can receive more intense treatment (higher doses given over a shorter time) than adults can, before serious side effects occur.




• Side effects

  Some of the unwanted side effects of cancer treatments cause more harm to children than they do to adults. This is because children's bodies are still growing and developing, so cancer and its treatment are more likely to affect developing organs.

  Side effects of chemotherapy and radiation therapy may happen right away or weeks or years after treatment. Cancer treatment may also affect a child's growth or cause a second cancer to form. Problems that appear weeks or years after treatment are called late effects. Because of possible late effects, childhood cancer survivors need life-long follow-up. (See the PDQ summary on Late Effects of Treatment for Childhood Cancer ¹ for more information).




• Supportive care

  The types of supportive care given to children may be different from those used for adults. For example, certain medicines used to control symptoms in adults may not be safe for children.

Children of different ages need different treatment and support.

The treatments and supportive care will be different for different age groups and will change as the child grows and develops. For some cancers, the prognosis (chance of recovery) and risk of late effects depend partly on the age of the child at the time of diagnosis or treatment. See CureSearch ² for more information about treatment and support for different age groups.

A child's circle of family and friends may be larger than it usually is for adults.

Even with a diagnosis of cancer, the child will still be going to school, spending time with friends and family, and enjoying many activities that were a part of life before cancer. The child's circle of family and friends may be large. In addition to parents, brothers, and sisters, many others may be closely involved in the child's everyday life. This includes grandparents, aunts, uncles, cousins, teachers, schoolmates, and friends. Everyone in a child's circle of family and friends are affected by the child's cancer diagnosis and treatment, and possible side effects of treatment.

Most decisions about care will be made by the child's parents or guardians.

Children under the age of 18 don't have the legal right to make their own decisions about treatment. Their parents or guardians legally make these decisions for them. Decisions about treatment may be difficult because of this. There are ethical concerns about informed consent (the process of giving information about possible treatments and their risks and benefits, before treatment decisions are made). In the treatment of children, parents are informed and decide whether to give permission for the treatment. Whenever possible, it is best that the child be involved and agrees with decisions about treatment.

Psychological Adjustment

Key Points for This Section

Most children who have cancer adjust well. The type of cancer and the treatments used can affect adjustment. Depression and Suicide A small number of children may have problems that lead to depression or suicide. It is important that survivors of childhood cancer have regular mental health check-ups as part of follow-up care. Post-traumatic Stress Disorder and Symptoms Post-traumatic stress disorder (PTSD) is an anxiety disorder that occurs after serious physical injury or severe mental or emotional distress. Children and teens with cancer, as well as parents and siblings, may be at risk for post-traumatic stress disorder.

Most children who have cancer adjust well.

Cancer treatment is stressful on the child and the family. However, studies have shown that most children treated for cancer, and children who are long-term survivors of cancer, have few serious psychological problems.

The early days of treatment, when the child is often in the hospital, are usually the most stressful for the child and the family. The child may be anxious about being away from home and receiving new treatment. This anxiety usually decreases over time. Studies have reported that, in general, children treated for cancer have no differences from other children in self-esteem, hopefulness, depression, anxiety, or loneliness.

Children who have a lot of support from their family are less likely to have problems adjusting.

The type of cancer and the treatments used can affect adjustment.

Some of the factors that may increase the risk of social, emotional, or behavioral problems include:

• Having leukemia, lymphoma, or a cancer or treatment that affects the central nervous system (brain and spinal cord).
• Having a stem cell transplant.
• Having family problems.
• Being younger than school age during treatment.

Depression and Suicide

A small number of children may have problems that lead to depression or suicide.

Some studies have shown that physical and emotional distress related to cancer and its treatment can cause mental health problems in certain childhood cancer survivors. These problems include depression that needs treatment and can lead to suicide. Signs of depression include the following:

• Appetite changes.
• Low energy.
• Sleep problems.
• Concentration problems.
• Increased irritability.
• Decreased interest in activities.
• Increased crying.

See the PDQ Supportive Care summary for more information about Depression ³ and Suicide ⁴ in children.

It is important that survivors of childhood cancer have regular mental health check-ups as part of follow-up care.

Follow-up cancer care may be given by the cancer treatment doctor or the main provider, such as the family doctor. It is important that regular mental health check-ups be part of this follow-up care. A patient who shows signs of depression or other mental health problems during follow-up care may be referred to a therapist or other mental health specialist. Many survivors get help from therapists who are experts in helping people who are recovering from cancer.

Post-traumatic Stress Disorder and Symptoms

Post-traumatic stress disorder (PTSD) is an anxiety disorder that occurs after serious physical injury or severe mental or emotional distress.

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

People who have survived very stressful situations, such as military combat or natural disasters, may also have PTSD. PTSD can affect cancer survivors in the following ways:

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

Family problems, little or no social support from family or friends, and stress not related to the cancer may increase the chances of having PTSD.

Because avoiding places and persons connected to the cancer is part of PTSD, survivors with PTSD may not get the medical treatment they need.

Childhood cancer survivors who are diagnosed with PTSD are more likely to have depression and to have difficulty with common aspects of young adulthood, such as doing well in school, taking part in social activities, and reaching career goals.

Children and teens with cancer, as well as parents and siblings, may be at risk for post-traumatic stress disorder.

In children and teens with cancer, symptoms of PTSD may occur during treatment or after treatment has ended. Those who feel very uncertain about their disease and future may be more likely to have PTSD symptoms. Parents and siblings (brothers and sisters) of childhood cancer survivors are also at high risk for PTSD.

It is important that cancer survivors and their families receive information about the possible psychological effects of their cancer experience and about early treatment of symptoms of PTSD.

Follow-up cancer care may be given by the cancer treatment doctor or the main provider, such as the family doctor. It is important that regular mental health check-ups be part of this follow-up care. A patient who shows signs of PTSD or other mental health problems during follow-up care may be referred to a therapist or other mental health specialist. Many survivors get help from therapists who are experts in helping people who are recovering from cancer.

Families

Key Points for This Section

When a child has cancer, all members of the family are affected. Social support can help decrease the family's distress.

When a child has cancer, all members of the family are affected.

Parents feel great distress when their child is diagnosed with a life-threatening disease. Over time, the level of distress may lessen. Each family is affected in its own way, and different members of the family will react in different ways.

Certain factors may increase the family's level of distress:

• The cancer patient is at a young age when diagnosed.
• The cancer treatments last for a long period of time.
• The child with cancer dies.

The entire family must adjust to changes in normal routine as the parents cope with the child's treatment, look for information, and try to also take care of the brothers and sisters. The parents' attention is focused on the child with cancer.

Brothers and sisters of the cancer patient need help to cope with their feelings of anxiety, loneliness, and fear. Brothers and sisters who are bone marrow (stem cell) donors for the cancer patient may have anxiety. Siblings who are not bone marrow donors may have school-related problems.

Although stress -related symptoms are common in siblings of childhood cancer patients, they sometimes report that their experience has made them more compassionate and that the cancer experience has brought their family closer together.

Social support can help decrease the family's distress.

Parents who are working and who have support from family, friends, and the health care team usually have lower levels of distress and feel more positive about their child's experience. Social support programs, such as support groups and summer camps, help brothers and sisters cope with the illness more easily.

Get More Information From NCI

Call 1-800-4-CANCER

For more information, U.S. residents may call the National Cancer Institute's (NCI's) Cancer Information Service toll-free at 1-800-4-CANCER (1-800-422-6237) Monday through Friday from 9:00 a.m. to 4:30 p.m. Deaf and hard-of-hearing callers with TTY equipment may call 1-800-332-8615. The call is free and a trained Cancer Information Specialist is available to answer your questions.

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Search the NCI Web site

The NCI Web site ⁶ 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 our “Best Bets” search box in the upper right hand corner of each Web page. The results that are most closely related to your search term will be listed as Best Bets at the top of the list of search results.

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 ⁷. These materials can also be ordered by telephone from the Cancer Information Service toll-free at 1-800-4-CANCER (1-800-422-6237), TTY at 1-800-332-8615.

Changes to This Summary (10/02/2008)

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 is a new summary.

Questions or Comments About This Summary

If you have questions or comments about this summary, please send them to Cancer.gov through the Web site’s Contact Form ⁸. We can respond only to email messages written in English.

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 ⁶. 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 method of treating symptoms 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. Some patients have symptoms caused by cancer treatment or by the cancer itself. During supportive care clinical trials, information is collected about how well new ways to treat symptoms of cancer work. The trials also study side effects of treatment and problems that come up during or after treatment. If a clinical trial shows that a new treatment is better than one currently being used, the new treatment may become "standard." Patients who have symptoms related to cancer treatment may want to think about taking part in a clinical trial.

Listings of clinical trials are included in PDQ and are available online at NCI's Web site ⁹. Descriptions of the trials are available in health professional and patient versions. Many cancer doctors who take part in clinical trials are also listed in PDQ. For more information, call the Cancer Information Service 1-800-4-CANCER (1-800-422-6237); TTY at 1-800-332-8615.

Glossary Terms

Feelings of fear, dread, and uneasiness that may occur as a reaction to stress. A person with anxiety may sweat, feel restless and tense, and have a rapid heart beat. Extreme anxiety that happens often over time may be a sign of an anxiety disorder.

A desire to satisfy a physical or mental need, such as for food, sex, or adventure.

The soft, sponge-like tissue in the center of most bones. It produces white blood cells, red blood cells, and platelets.

A term for diseases in which abnormal cells divide without control and can invade nearby tissues. Cancer cells can also spread to other parts of the body through the blood and lymph systems. There are several main types of cancer. Carcinoma is cancer that begins in the skin or in tissues that line or cover internal organs. Sarcoma is cancer that begins in bone, cartilage, fat, muscle, blood vessels, or other connective or supportive tissue. Leukemia is cancer that starts in blood-forming tissue such as the bone marrow, and causes large numbers of abnormal blood cells to be produced and enter the blood. Lymphoma and multiple myeloma are cancers that begin in the cells of the immune system. Central nervous system cancers are cancers that begin in the tissues of the brain and spinal cord.

The brain and spinal cord. Also called CNS.

Treatment with drugs that kill cancer cells.

To adjust to new situations and overcome problems.

To heal or restore health; a treatment to restore health.

A mental condition marked by ongoing feelings of sadness, despair, loss of energy, and difficulty dealing with normal daily life. Other symptoms of depression include feelings of worthlessness and hopelessness, loss of pleasure in activities, changes in eating or sleeping habits, and thoughts of death or suicide. Depression can affect anyone, and can be successfully treated. Depression affects 15-25% of cancer patients.

The process of identifying a disease, such as cancer, from its signs and symptoms.

Extreme mental or physical pain or suffering.

The amount of medicine taken, or radiation given, at one time.

Monitoring a person's health over time after treatment. This includes keeping track of the health of people who participate in a clinical study or clinical trial for a period of time, both during the study and after the study ends.

A process in which a person is given important facts about a medical procedure or treatment, a clinical trial, or genetic testing before deciding whether or not to participate. It also includes informing the patient when there is new information that may affect his or her decision to continue. Informed consent includes information about the possible risks, benefits, and limits of the procedure, treatment, trial, or genetic testing.

Side effects of cancer treatment that appear months or years after treatment has ended. Late effects include physical and mental problems and second cancers.

Cancer that starts in blood-forming tissue such as the bone marrow and causes large numbers of blood cells to be produced and enter the bloodstream.

Cancer that begins in cells of the immune system. There are two basic categories of lymphomas. One kind is Hodgkin lymphoma, which is marked by the presence of a type of cell called the Reed-Sternberg cell. The other category is non-Hodgkin lymphomas, which includes a large, diverse group of cancers of immune system cells. Non-Hodgkin lymphomas can be further divided into cancers that have an indolent (slow-growing) course and those that have an aggressive (fast-growing) course. These subtypes behave and respond to treatment differently. Both Hodgkin and non-Hodgkin lymphomas can occur in children and adults, and prognosis and treatment depend on the stage and the type of cancer.

Refers to the practices and procedures used for the prevention, treatment, or relief of symptoms of a diseases or abnormal conditions. This term may also refer to a legal drug used for the same purpose.

A person’s overall psychological and emotional condition. Good mental health is a state of well-being in which a person is able to cope with everyday events, think clearly, be responsible, meet challenges, and have good relationships with others.

A part of the body that performs a specific function. For example, the heart is an organ.

PDQ is an online database developed and maintained by the National Cancer Institute. Designed to make the most current, credible, and accurate cancer information available to health professionals and the public, PDQ contains peer-reviewed summaries on cancer treatment, screening, prevention, genetics, complementary and alternative medicine, and supportive care; a registry of cancer clinical trials from around the world; and directories of physicians, professionals who provide genetics services, and organizations that provide cancer care. Most of this information, and more specific information about PDQ, can be found on the NCI's Web site at http://www.cancer.gov/cancertopics/pdq. Also called Physician Data Query.

An anxiety disorder that develops in reaction to physical injury or severe mental or emotional distress, such as military combat, violent assault, natural disaster, or other life-threatening events. Having cancer may also lead to post-traumatic stress disorder. Symptoms interfere with day-to-day living and include reliving the event in nightmares or flashbacks; avoiding people, places, and things connected to the event; feeling alone and losing interest in daily activities; and having trouble concentrating and sleeping. Also called PTSD.

The likely outcome or course of a disease; the chance of recovery or recurrence.

Having to do with how the mind works and how thoughts and feelings affect behavior.

The overall enjoyment of life. Many clinical trials assess the effects of cancer and its treatment on the quality of life. These studies measure aspects of an individual’s sense of well-being and ability to carry out various activities.

Energy released in the form of particle or electromagnetic waves. Common sources of radiation include radon gas, cosmic rays from outer space, medical x-rays, and energy given off by a radioisotope (unstable form of a chemical element that releases radiation as it breaks down and becomes more stable).

The use of high-energy radiation from x-rays, gamma rays, neutrons, protons, and other sources to kill cancer cells and shrink tumors. Radiation may come from a machine outside the body (external-beam radiation therapy), or it may come from radioactive material placed in the body near cancer cells (internal radiation therapy). Systemic radiation therapy uses a radioactive substance, such as a radiolabeled monoclonal antibody, that travels in the blood to tissues throughout the body. Also called irradiation and radiotherapy.

Refers to a new primary cancer in a person with a history of cancer.

A feeling of self-worth, self-confidence, and self-respect.

A problem that occurs when treatment affects healthy tissues or organs. Some common side effects of cancer treatment are fatigue, pain, nausea, vomiting, decreased blood cell counts, hair loss, and mouth sores.

A network of family, friends, neighbors, and community members that is available in times of need to give psychological, physical, and financial help.

In medicine, a doctor or other health care professional who is trained and licensed in a special area of practice. Examples of medical specialists include oncologists (cancer specialists) and hematologists (blood specialists).

A column of nerve tissue that runs from the base of the skull down the back. It is surrounded by three protective membranes, and is enclosed within the vertebrae (back bones). The spinal cord and the brain make up the central nervous system, and spinal cord nerves carry most messages between the brain and the rest of the body.

Having to do with deep, often religious, feelings and beliefs, including a person’s sense of peace, purpose, connection to others, and beliefs about the meaning of life.

A cell from which other types of cells develop. For example, blood cells develop from blood-forming stem cells.

A method of replacing immature blood-forming cells that were destroyed by cancer treatment. The stem cells are given to the person after treatment to help the bone marrow recover and continue producing healthy blood cells.

The response of the body to physical, mental, or emotional pressure. This may make a person feel frustrated, angry, or anxious, and may cause unhealthy chemical changes in the body. Untreated, long-term stress may lead to many types of mental and physical health problems.

The act of taking one's own life on purpose.

A group of people with similar disease who meet to discuss how better to cope with their disease and treatment.

Care given to improve the quality of life of patients who have a serious or life-threatening disease. The goal of supportive care is to prevent or treat as early as possible the symptoms of a disease, side effects caused by treatment of a disease, and psychological, social, and spiritual problems related to a disease or its treatment. Also called comfort care, palliative care, and symptom management.

One who remains alive and continues to function during and after overcoming a serious hardship or life-threatening disease. In cancer, a person is considered to be a survivor from the time of diagnosis until the end of life.

An indication that a person has a condition or disease. Some examples of symptoms are headache, fever, fatigue, nausea, vomiting, and pain.

Treatment.

Injury to the body, or an event that causes long-lasting mental or emotional damage.