Adjustment to Cancer: Anxiety and Distress (PDQ®)—Patient Version - National Cancer Institute

Adjustment to Cancer: Anxiety and Distress (PDQ®)–Patient Version

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Overview

KEY POINTS

Anxiety and distress can affect the quality of life of patients with cancer and their families.
Patients with cancer have different levels of distress.
There are certain risk factors for high levels of distress in people with cancer.
Screening is done to find out if the patient needs help adjusting to cancer.

Anxiety and distress can affect the quality of life of patients with cancer and their families.

Patients living with cancer feel many different emotions, including anxiety and distress.

Anxiety is unease, fear, and dread caused by stress.
Distress is emotional, mental, social, or spiritual suffering. Patients who are distressed may have a range of feelings, from sadness and a loss of control to depression, anxiety, panic, and isolation.

Patients may have anxiety and distress when:

Being screened for cancer.
Waiting for test results.
Hearing a cancer diagnosis.
Being treated for cancer.
Worrying that cancer will recur (come back).

Anxiety and distress may cause problems such as nausea and vomiting before each treatment, having more pain than usual, and sleeplessness. Patients may decide to delay cancer treatment or miss check-ups when they feel anxiety and distress.

Even mild anxiety can affect the quality of life for cancer patients and their families and may need to be treated.

Patients with cancer have different levels of distress.

Some patients with cancer have a low level of distress, and others have higher levels of distress. The level of distress ranges from being able to adjust to living with cancer to having a serious mental health problem, such as major depression.

This summary describes the less severe levels of distress in adults with cancer, including the following:

Normal adjustment—A condition in which a person makes changes in his or her life to manage a stressful event such as a cancer diagnosis. In normal adjustment, a person learns to cope well with emotional distress and solve problems related to cancer.
Psychological and social distress—A condition in which a person has some trouble making changes in their life to manage a stressful event such as a cancer diagnosis. The feelings of distress may range from normal feelings of vulnerability and sadness to feelings that affect quality of life, such as depression, panic, and spiritual crisis. Help from a professional to learn new coping skills may be needed.
Adjustment disorder —A condition in which a person has a lot of trouble making changes in his or her life to manage a stressful event such as a cancer diagnosis. Symptoms such as depression, anxiety, or other emotional, social, or behavioral problems occur and worsen the person's quality of life. Medicine and help from a professional to manage these symptoms may be needed.
Anxiety disorder—A condition in which a person has severe anxiety. It may be because of a stressful event like a cancer diagnosis or for no known reason. Symptoms of anxiety disorder include extreme worry, fear, and dread. When the symptoms are severe, it affects a person's ability to lead a normal life. There are many types of anxiety disorders, including the following:
- Generalized anxiety disorder.
- Panic disorder (a condition that causes sudden feelings of panic).
- Agoraphobia (fear of open places or situations in which it might be hard to get help if needed).
- Social anxiety disorder (fear of social situations).
- Specific phobia (fear of a specific object or situation).
- Obsessive-compulsive disorder.
- Post-traumatic stress disorder.

There are certain risk factors for high levels of distress in people with cancer.

Nearly half of cancer patients report having a lot of distress. Patients with lung, pancreatic, and brain cancers may be more likely to report distress, but in general, the type of cancer does not make a difference. Factors that increase the risk of anxiety and distress are not always related to the cancer.

The following are risk factors for high levels of distress in patients with cancer:

Trouble doing the usual activities of daily living.
Physical problems and side effects of treatment (such as fatigue, nausea, or pain).
Problems at home.
Unmet social and spiritual needs.
Depression, cancer-related post-traumatic stress, or other emotional problems.
Being younger, female, or nonwhite.
Having a lower level of education.

Patients who have a high level of distress when they are diagnosed with cancer are more likely to have continued high levels of distress after their diagnosis.

Screening is done to find out if the patient needs help adjusting to cancer.

Screening is usually done by asking the patient questions about how they feel, their energy level, relationships, work, and finances. Patients who show a medium to high level of distress may be referred to a social worker, mental health professional, palliative care specialist, or pastoral counselor for further evaluation and therapy.

This summary is about adjustment to cancer, anxiety, and distress in adults with cancer.

See the following PDQ summaries for information on depression and post-traumatic stress related to cancer:

Normal Adjustment

KEY POINTS

Each patient will cope in different ways.
Patients who are adjusting to the changes caused by cancer may have distress.
Cancer patients need different coping skills at different points in time.
- Hearing the diagnosis
- Being treated for cancer
- Remission after treatment
- Learning that the cancer has come back
- Stopping cancer treatment
- Becoming a long-term cancer survivor

Each patient will cope in different ways.

The way patients cope is usually linked to their personality traits (such as whether they usually expect the best versus the worst, or if they are shy versus outgoing).

Patients find it easier to adjust if they can carry on with their usual routines and work, keep doing activities that matter to them, and cope with the stress in their lives. Patients who adjust well to coping with cancer continue to find meaning and importance in their lives. Patients who do not adjust well may withdraw from relationships or situations and feel hopeless.

Patients who are having trouble coping with cancer may find it helpful to talk with a professional about their concerns and worries. These specialists may include the following:

Mental health professionals, including psychologists and psychiatrists.
Social workers.
Palliative care specialists.
Religious counselors.

Patients who are adjusting to the changes caused by cancer may have distress.

Distress can occur when patients feel they are unable to manage or control changes caused by cancer. Patients with the same diagnosis or treatment can have different levels of distress. Patients have less distress when they feel the demands of the diagnosis and treatment are low or the amount of support they get is high. For example, a health care professional can help the patient adjust to the side effects of chemotherapy by giving medicine for nausea.

Cancer patients need different coping skills at different points in time.

Living with a diagnosis of cancer involves many life adjustments. Normal adjustment involves learning to cope with emotional distress and solve problems caused by having cancer.

The coping skills needed will change at different points in a patient’s cancer journey. These include the following:

Hearing the diagnosis.
Being treated for cancer.
Finishing cancer treatment.
Learning that the cancer is in remission.
Learning that the cancer has come back.
Deciding to stop cancer treatment.
Becoming a cancer survivor.

Hearing the diagnosis

The process of adjusting to cancer begins before patients hear the diagnosis. Patients may feel worried and afraid when they have unexplained symptoms or are having tests done to find out if they have cancer.

A diagnosis of cancer can cause patients to have more distress when their fears become true. It may be difficult for patients to understand what the doctors are telling them during this time. See Talking with the Health Care Team in the PDQ summary on Communication in Cancer Care for more information.

Additional help from health professionals for problems such as fatigue, trouble sleeping, and depression may be needed during this time.

Being treated for cancer

As patients go through cancer treatment, they use coping skills (also known as coping strategies) to adjust to the stress of treatment.

Coping skills can help patients with certain problems, emotional distress, and cancer by using thoughts and behaviors to adjust to life situations. For example, changing a daily routine or work schedule to manage the side effects of cancer treatment is a coping skill.

Remission after treatment

Patients may be glad that treatment has ended but feel increased anxiety as they see their treatment team less often. Other concerns include returning to work and family life and being worried about any change in their health.

Many patients will feel increased distress after finishing treatment, but this usually does not last long and may go away within a few weeks.

During remission, patients may become distressed before follow-up medical visits because they worry that the cancer has come back. Waiting for test results can be very stressful.

Learning that the cancer has come back

Cancer that comes back after treatment may cause an increase in distress from having:

A return of symptoms.
A sense of hopelessness.
A negative view of the cancer.

The patient's quality of life may be improved if they are able to manage their cancer and have support from friends and family.

Stopping cancer treatment

Sometimes cancer comes back and does not get better with treatment. The treatment plan then changes from one that is meant to cure the cancer to one that gives comfort and relieves symptoms. This may cause the patient to have an increase in anxiety or depression. See the PDQ summaries on Depression and Cancer-Related Post-traumatic Stress for more information.

Patients who adjust to the return of cancer often keep up hope in meaningful life activities. Some patients look to spirituality or religious beliefs to help keep up their quality of life. See the PDQ summary on Spirituality in Cancer Care for more information.

Becoming a long-term cancer survivor

Patients adjust to finishing cancer treatment and being long-term cancer survivors over many years. Some common problems reported by cancer survivors as they face the future include the following:

Feeling anxious that the cancer will come back.
Feeling a loss of control.
Having anxiety and nausea in response to reminders of chemotherapy (such as smells or sights).
Having symptoms of post-traumatic stress, such as being unable to stop thinking about cancer or its treatment or feeling alone or separate from others.
Feeling tired all of the time.
Being concerned about body image and sexuality.

Regular exercise and individual or group counseling may help improve these problems and the patient's quality of life.

Most patients adjust well and some even say that surviving cancer has given them a greater appreciation for life, a better understanding of what is most important in their life, and stronger spiritual or religious beliefs.

Some patients may have more trouble adjusting because of medical problems, fewer friends and family members who give support, money problems, or mental health problems not related to the cancer.

Psychological and Social Distress

KEY POINTS

Feelings of physical, emotional, social, or spiritual distress can make it hard to cope with cancer treatment.
Patients who are in distress can be helped by different kinds of emotional and social support.

Feelings of physical, emotional, social, or spiritual distress can make it hard to cope with cancer treatment.

Almost all patients living with cancer have feelings of distress. Feelings of distress range from sadness and fears to more serious problems such as depression, anxiety, panic, feeling uncertain about spiritual beliefs, or feeling alone or separate from friends and family.

Patients who are in distress during any phase of cancer need treatment and support. Patients are more likely to need to be checked and treated for distress during the following periods:

Soon after diagnosis.
At the start of treatment.
At the end of treatment.
During remission.
If the cancer comes back.
If the goal of treatment changes from curing or controlling cancer to palliative therapyto relieve symptoms and improve quality of life.

Patients who are in distress can be helped by different kinds of emotional and social support.

Studies have shown that patients who are having trouble adjusting to cancer are helped by treatments that give them emotional and social support, including the following:

Relaxation training.
Counseling or talk therapy.
Cancer education sessions.
Existential therapy (focuses on the human condition, including what humans are capable of, as well as their limitations).
Social support in a group setting.

Benefits from these therapies include having lower levels of depression, anxiety, and cancer- and treatment-related symptoms, as well as feeling more hopeful. Patients who have the most distress seem to get the most relief from these therapies.

Adjustment Disorders

KEY POINTS

Adjustment disorders may cause serious problems in daily life.
Counseling and other activities can help patients with adjustment disorders.
Counseling may be combined with antianxiety or antidepressant medicine.

Adjustment disorders may cause serious problems in daily life.

An adjustment disorder occurs when the patient's reaction to a stressful event:

Is more severe than the expected amount of distress.
Affects relationships or causes problems at home or work.
Includes symptoms of depression and anxiety or other emotional, social, or behavioral problems.

Stressful events for cancer patients include diagnosis, treatment, cancer recurrence, and when side effects occur. Patients who have trouble coping with these events may develop an adjustment order. An adjustment disorder usually begins within 3 months of a stressful event.

Counseling and other activities can help patients with adjustment disorders.

Individual (one-to-one) and group counseling have been shown to help cancer patients with adjustment disorders. Counseling may include treatment that focuses on the patient's thoughts, feelings, and behaviors.

The following may help patients cope:

Relaxation training.
Cognitive behavior therapy.
Problem-solving.
Support from friends and family.
Meditation.
Yoga.
Mental imagery exercises.
Hypnosis.
Positive thoughts about coping.
Breathing exercises.

Counseling may be combined with antianxiety or antidepressant medicine.

Counseling should be tried before medicine. Some patients are not helped by counseling or have a mental health problem, such as severe anxiety or major depression. These patients may be helped by an antianxiety or antidepressant medicine along with counseling. See the PDQ summary on Depression for more information.

Anxiety Disorders

KEY POINTS

Anxiety disorders are strong fears that may be caused by physical or psychological stress.
Anxiety disorders affect the patient’s quality of life.
There are different causes of anxiety disorders in cancer patients.
A cancer diagnosis may cause anxiety disorders to come back in patients with a history of them.
There are different types of anxiety disorders.
There are different kinds of treatment for anxiety disorders.
Medicine may be used alone or combined with other types of treatment for anxiety disorders.

Anxiety disorders are strong fears that may be caused by physical or psychological stress.

Studies show that almost half of all patients with cancer say they feel some anxiety and about one-fourth of all patients with cancer say they feel a great deal of anxiety. A patient may become more anxious as cancer spreads or treatment becomes more aggressive. This is especially true for patients who had an anxiety disorder before their cancer diagnosisand may lead to the recurrence of the anxiety disorder.

For some patients, anxiety may feel like it is more than they can handle and affect cancer treatment.

Patients are more likely to have anxiety disorders during cancer treatment if they have any of the following:

A history of an anxiety disorder.
A history of physical or emotional trauma.
Anxiety at the time of diagnosis.
Few family members or friends to give them support.
Severe pain that is not controlled well.
Cancer that is not getting better with treatment.
Trouble taking care of their personal needs such as bathing or eating.

Anxiety disorders affect the patient’s quality of life.

The diagnosis is based on how symptoms of anxiety affect the patient's quality of life, what kinds of symptoms began since the cancer diagnosis or treatment, when the symptoms occur, and how long they last.

Anxiety disorders cause serious symptoms that affect day-to-day life, including the following:

Feeling worried all the time.
Not being able to learn new information.
Not being able to "turn off thoughts" most of the time.
Trouble sleeping most nights.
Frequent crying spells.
Feeling afraid most of the time.
Having symptoms such as fast heartbeat, dry mouth, shaky hands, restlessness, or feeling on edge.
Anxiety that is not relieved by the usual ways, such as distraction by staying busy.

There are different causes of anxiety disorders in cancer patients.

In addition to anxiety caused by a cancer diagnosis, the following may cause an anxiety disorder in patients with cancer:

Pain: Patients whose pain is not well controlled with medicine feel anxious, and anxiety can increase pain.
Other medical problems: Sepsis, a low blood oxygen level, heart failure, and electrolyte imbalances can also cause anxiety. Anxiety may be a warning sign of a change in metabolism (such as low blood sugar), a heart attack, severe infection, pneumonia, or a blood clot in the lung.
Certain types of tumors: Certain tumors of the adrenal gland, pituitary gland, pancreas, or thyroid can cause symptoms of anxiety and panic attacks. Tumors that have spread to the brain and spinal cord and tumors in the lungs can also cause symptoms of anxiety.
Taking certain drugs: Certain types of drugs, including corticosteroids, thyroxine, bronchodilators, and antihistamines, can cause restlessness, agitation, or anxiety.
Withdrawing from habit-forming drugs: Withdrawal from alcohol, nicotine, opioids, or antidepressant medicine can cause agitation or anxiety.

Anxiety from these causes is usually managed by treating the cause of the anxiety.

A cancer diagnosis may cause anxiety disorders to come back in patients with a history of them.

When patients who had an anxiety disorder in the past are diagnosed with cancer, the anxiety disorder may come back. These patients may feel extreme fear, be unable to remember new information, or be unable to follow through with medical tests and procedures.

Symptoms of anxiety disorders include the following:

Shortness of breath.
Fast heartbeat.
Sweating.
Restlessness.
Muscle tightness.
Feeling faint or dizzy.
Feeling nauseated.
Feeling irritable.
Being afraid they are having a heart attack.
Being afraid they are “going crazy”.

There are different types of anxiety disorders.

Patients who have intense fear, have trouble understanding information about their cancer, or are unable to cooperate with medical tests should be screened for the following types of anxiety disorders:

Phobias . Phobias are fears about a situation or an object that lasts over time. People with phobias usually feel intense anxiety and avoid the situation or object they are afraid of. Phobias may make it hard for patients to follow through with tests and procedures or treatment. For example, patients with a phobia of needle sticks may avoid having blood drawn for laboratory tests.
Panic disorder. Patients with a panic disorder feel sudden intense anxiety, known as panic attacks. A panic attack usually lasts for 10 to 20 minutes, but the fear of having another panic attack may cause feelings of discomfort to continue for longer.
Generalized anxiety disorder . Patients with a generalized anxiety disorder may feel extreme and constant anxiety or worry. A person who has generalized anxiety may feel irritable, restless, or dizzy, have tense muscles, shortness of breath, a fast heartbeat, sweating, or get tired quickly.
Obsessive-compulsive disorder (OCD). OCD is diagnosed when a person uses persistent (obsessive) thoughts, ideas, or images and compulsions (repeated behaviors) to manage feelings of distress. The obsessions and compulsions affect the person's ability to work, go to school, or be in social situations. Examples of compulsions include frequent hand washing or constantly checking to make sure a door is locked.
Cancer patients with OCD may be unable to follow through with cancer treatment because of persistent thoughts and behaviors. Patients with OCD may also have obsessive thoughts about their cancer coming back. OCD is rare in patients with cancer who did not have an anxiety disorder before being diagnosed with cancer.
Health anxiety disorder. Cancer survivors may develop health anxiety disorder related to their fears about their cancer coming back. This may include being highly alert to any possible physical symptoms, extreme focus on their cancer status, and requesting medical tests and visits with their doctor more often or earlier than needed.
Post-traumatic stress disorder . Post-traumatic stress can come from feelings of shock, fear, helplessness, and horror at the time of cancer diagnosis. See the PDQsummary on Cancer-Related Post-traumatic Stress for information about this condition.

There are different kinds of treatment for anxiety disorders.

Patients with anxiety disorders need information and support to understand their cancer and treatment choices. Psychological treatments can also be helpful. These include the following:

Individual (one-to-one) counseling.
Couple and family counseling.
Crisis counseling.
Group therapy.
Self-help groups.
Cognitive behavior therapy.
Relaxation training, such as hypnosis, meditation, guided imagery, or biofeedback.

Using different methods together may be helpful for some patients. See the Psychological and Social Distress section of this summary for more information.

Medicine may be used alone or combined with other types of treatment for anxiety disorders.

Antianxiety medicines may be used alone or combined with other psychological therapies. These medicines relieve symptoms of anxiety, such as feelings of fear, dread, uneasiness, and muscle tightness. They may relieve daytime distress and lessen trouble sleeping.

Studies show that antidepressants are useful in treating anxiety disorders. Children and teenagers being treated with antidepressants have an increased risk of thinking about suicide and suicide and must be watched closely. See the Treatment section of the PDQ summary on Depression for more information.

Current Clinical Trials

Use our clinical trial search to find NCI-supported cancer clinical trials that are accepting patients. You can search for trials based on the type of cancer, the age of the patient, and where the trials are being done. General information about clinical trials is also available.

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Purpose of This Summary

This PDQ cancer information summary has current information about normal adjustment issues, and the pathophysiology and treatment of psychosocial distress and the adjustment disorders. It is meant to inform and help patients, families, and caregivers. It does not give formal guidelines or recommendations for making decisions about health care.

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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." Patients may want to think about taking part in a clinical trial. Some clinical trials are open only to patients who have not started treatment.

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