Normal Adjustment and Distress (PDQ®): Supportive care - Patient Information [NCI]
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Normal Adjustment and Distress
This patient summary on normal adjustment and the adjustment disorders is adapted from a summary written for health professionals by cancer experts. This and other credible information about cancer treatment, screening, prevention, supportive care, and ongoing clinical trials, is available from the National Cancer Institute. Most patients with cancer experience a variety of emotional responses, however, they do not have signs and symptoms of any specific mental disorder. Psychological and social distress can be experienced at many levels ranging from normal adjustment to adjustment disorders to major mental disorders (for example, major depressive disorder). This brief summary describes normal adjustment issues, psychological and social distress, and the adjustment disorders. (See the PDQ summaries on Anxiety Disorders and Depression for more information.)
Adjusting to cancer is an ongoing process in which the patient learns to cope with emotional distress, solve cancer-related problems, and gain control over cancer-related life events. Patients are faced with many challenges that change as the disease and its treatment change. Common periods of crisis and significant challenge include hearing the diagnosis, receiving treatment (for example, surgery, radiation therapy, and chemotherapy), completing treatment, hearing that the cancer is in remission, hearing that the cancer has come back, and becoming a cancer survivor. Each of these events involves specific coping tasks, questions about life and death, and common emotional problems.
Patients are better able to adjust to a cancer diagnosis if they are able to continue fulfilling normal responsibilities, cope with emotional distress, and stay actively involved in activities that are meaningful and important to them.
Coping is the use of thoughts and behaviors to adjust to life situations. A person's coping style is usually related to his or her personality (for example, always expecting the best, always expecting the worst, being shy or reserved, or being outgoing).
Coping strategies are thoughts and behaviors that are used in rare situations, for example, when one must change his or her daily routine or work schedule to adjust to the side effects of cancer treatment. Developing coping strategies can help a patient learn how to change problem situations, manage emotional distress, and understand why cancer has happened and what impact cancer may have on his or her life. Patients who adjust well are usually committed and actively involved in coping with cancer. They are still able to find meaning and importance in their lives. Patients who do not adjust well become less involved with coping, withdraw, and feel hopeless. Studies are looking at how different types of coping strategies affect the quality of life for cancer survivors.
Distress can occur when a person feels that he or she does not have the resources to manage or control the cancer. Distress experienced by patients who have the same diagnosis and are undergoing the same treatment may be very different. A doctor or health care professional can help the patient adjust to the treatment schedule and/or help the patient cope with treatment by, for example, providing medication for nausea.
General Factors Influencing Adjustment
Many individual differences affect how a patient adjusts to cancer. It is difficult to predict how a person will cope with cancer. The following factors influence how a patient adjusts to cancer:
- The type of cancer, cancer stage, and chance of recovery.
- The phase of cancer such as newly diagnosed, being treated, in remission, or recurrent cancer.
- Individual coping abilities.
- Whether or not the patient tends to focus on the most hopeful side of situations.
- Friends and family available to support the patient.
- The patient's age.
- The availability of treatment.
- Beliefs about the cause of cancer.
A study of patients with breast cancer found that most coped well with their stress. Being diagnosed at a young age, having a history of depression or anxiety, or undergoing more extensive treatment were linked to a more stressful adjustment over time.
Specific Influences on Adjustment
Hearing the Diagnosis
The process of adjusting to cancer can begin even before hearing the diagnosis. Patients may experience normal levels of fear, worry, and concern when they have unexplained symptoms or are undergoing testing to determine if they have cancer. When a patient hears the diagnosis of cancer, many patients wonder, "Could I die from this?"
Receiving a diagnosis of cancer can cause expected and normal emotional distress. Some patients may feel disbelief and ask, "Are you sure you have the right test results?" Most patients feel they are unable to think clearly. They may feel numb or in shock, or as if "This can't be happening to me." Many patients may not understand or remember important information that the doctor gave them about the diagnosis and treatment options. Patients should have a way to review this information by having someone with them at appointments, requesting that the session be taped, or by requesting a second appointment to ask the doctor questions and go over the treatment plan. As the patient gradually accepts the reality of the diagnosis, he or she may begin to experience depression, anxiety, lack of appetite, inability to sleep, poor concentration, and varying degrees of inability to function in daily activities. There can be high levels of stress for newly diagnosed patients awaiting surgery. Extra professional support to help deal with problems such as fatigue, insomnia, and depressed mood can be helpful during this time. When the patient receives and understands information about treatment options, he or she may gradually feel more hopeful and optimistic. Eventually, patients develop ways to cope and to adjust to the cancer diagnosis.
When cancer treatment begins, patients may experience fears about painful procedures, unwanted side effects (for example hair loss, nausea and vomiting, fatigue, pain), and interruptions to normal activities and responsibilities (for example being unable to work). Patients who can weigh the discomforts of short-term loss against the benefits of long-term gain (for example living longer) and decide, "It's worth it" usually adjust well. Questions that patients may ask during treatment include, "Will I survive this?"; "Will they get it all?"; or "What side effects will I experience?" As these questions arise, patients will learn to adjust with them. Developing ways to cope with specific problems (for example fatigue, transportation to treatment, and work schedule changes) is helpful.
Completing cancer treatment can cause mixed feelings. It may be a time of celebration and relief or a time of increased anxiety with awareness that the cancer could return once the treatment is stopped. Patients who can balance their positive expectations with the realities of ongoing fears adjust well. Many patients experience increased anxiety and fear of the cancer returning as they have less frequent contact with their physician. Other adjustment concerns include living with uncertainty, resuming previous responsibilities, and being overly concerned about health. During remission, patients often experience normal anxiety and worry as the dates of regular follow-up appointments with their oncologist approach with the possibility that the cancer has returned.
A study of women with early-stage breast cancer suggests that patients who have more physical symptoms and side effects during treatment are more likely to have distress following treatment.
Normal adjustment to post-treatment and remission may involve using the following coping strategies to help control normal emotional distress:
- Being honest with one's emotions.
- Being aware of one's feelings and able to express them to others.
- Having a nonjudgmental acceptance of one's feelings and a willingness to work through these emotions.
- Having support from others who are willing to listen and accept.
Patients who can express a wide range of both positive and negative emotions usually adjust well.
The Return of Cancer
Changing from a treatment plan that focuses on curing the cancer to one that provides comfort and relief of symptoms can cause extreme anxiety. Patients may experience shock, disbelief, and denial followed by a period of significant distress (for example, depressed moods, difficulty concentrating, and frequent thoughts of death). Normal adjustment may include periods of sadness and crying, feelings of anger at God or a higher power, periods of withdrawal and isolation, and thoughts of giving up. Patients gradually adjust to the return of cancer over a period of weeks by changing expectations from curing to healing. Healing is a process of "becoming whole again" by transforming one's life in many ways in the face of death. It is very important that the patient maintain hope throughout this process. Patients who believe that pain and suffering can be controlled will have hope for future quality of life. Those who believe they are loved and cared for will have hope in future relationships. Religion and spirituality are very important in helping patients maintain hope.
The adjustment from completing cancer treatment to a long-term survivorship is a gradual process that extends over many years. Some common problems reported by cancer survivors as they face the future include fear of the cancer coming back, lasting physical effects such as tiredness, problems sleeping, and concerns about sexual function. Most patients adjust well and some even report benefits of having cancer such as a greater appreciation of life, changes in life values, and stronger spiritual or religious beliefs. Patients who do not adjust well usually have more medical problems, fewer friends and family who provide support, fewer financial resources, and problems with psychological adjustment unrelated to the cancer.
Psychological and Social Distress
Most patients experience some level of distress, however, only a small percentage receive help. Distress is an unpleasant emotional, psychological, social, or spiritual experience that interferes with the patient's ability to cope with cancer treatment. Patients may experience a range of feelings from normal sadness and fear to deep depression, anxiety, panic, or isolation. These feelings can interfere with a person's ability to relate to family, friends, coworkers, and others during the normal routines of daily living. This is called social distress.
Health care professionals may have patients complete questionnaires periodically to identify the need for referral to a mental health professional. Key times that distress may become disabling include the time of diagnosis, during cancer treatment, at the end of a long course of treatment, during remission, when the cancer returns, or when beginning palliative care. Patients who are experiencing mild distress may benefit from a referral to a self-help group. Patients who are experiencing moderate to severe distress may require a referral to a mental health professional such as a psychiatrist, psychologist, social worker, or pastoral counselor.
Psychological and Social Assessment
It is important that patients understand the benefits of talking with a mental health professional about their concerns and worries. A patient can expect the health professional to:
- Listen closely to his or her concerns.
- Show an interest in his or her experiences with cancer.
- Ask about his or her family, friends, and other persons who provide support.
- Ask how he or she has been adjusting to the cancer.
- Encourage him or her to continue using coping strategies that are successful.
- Suggest other coping strategies to address his or her concerns.
Patients will be encouraged to continue counseling or psychotherapy as needed.
Psychological and Social Therapies for Distress
Recent studies of psychological and social therapies have shown benefits for cancer patients. These therapies are defined as non-drug treatments offering psychological and educational support, such as:
- Relaxation training.
- Coping strategies.
- Cancer education/information sessions.
- Group social support.
These therapies may be combined in different ways for various lengths of time, in both individual and group formats. To date, these therapies have most commonly been studied in white, middle-to-higher income American women with breast cancer, though they are currently being studied in more patient groups. Cancer patients who receive such therapies show positive benefits compared to those who do not, including lower levels of depression, anxiety, and disease-related symptoms, as well as improved immune system functioning and health habits like exercise. The size of these benefits and how they affect patients' recovery will need more study.
The Adjustment Disorders
Adjustment disorders include behaviors or moods more extreme than expected in reaction to a cancerdiagnosis, treatment, recurrence, or side effects. These behaviors or moods may result in significant problems in functioning with family, friends, and at work. An adjustment disorder usually begins within three months of the first signs of distress, for example a cancer diagnosis. Some patients may develop a chronic adjustment disorder because they experience multiple causes of distress, one right after another (for example, the cancer diagnosis, the start of treatment, side effects of treatment, completion of treatment, and returning to work). Chronic adjustment disorders may become a more serious mental disorder (for example major depression). This is more common in children and adolescents than in adults. (See the PDQ summary on Pediatric Supportive Care for more information.)
Individual and Group Counseling and Psychotherapy
Treatment that focuses on the patient's thoughts, feelings, and behaviors may be used to relieve emotional distress in individual patients or groups. The following are examples of these techniques:
- Relaxation training.
- Thought stopping.
- Coping self-statements.
- Mental imagery exercises.
Counseling or psychotherapy should be tried before medication. If the patient does not improve with short-term psychotherapy or develops a more severe mental disorder, such as depression, the doctor will then prescribe the appropriate medication. (Refer to the PDQ summaries on Depression and Anxiety Disorder for more information.)
Get More Information From NCI
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. A trained Cancer Information Specialist is available to answer your questions.
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Changes to This Summary (04 / 22 / 2009)
The PDQcancer 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.
Editorial changes were made to this summary.
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PDQ IS A COMPREHENSIVE CANCER DATABASE AVAILABLE ON NCI'S WEB SITE.
PDQ is the National Cancer Institute's (NCI's) comprehensive cancer information database. Most of the information contained in PDQ is available online at NCI's Web site. PDQ is provided as a service of the NCI. The NCI is part of the National Institutes of Health, the federal government's focal point for biomedical research.
PDQ CONTAINS CANCER INFORMATION SUMMARIES.
The PDQ database contains summaries of the latest published information on cancer prevention, detection, genetics, treatment, supportive care, and complementary and alternative medicine. Most summaries are available in two versions. The health professional versions provide detailed information written in technical language. The patient versions are written in easy-to-understand, nontechnical language. Both versions provide current and accurate cancer information.
THE PDQ CANCER INFORMATION SUMMARIES ARE DEVELOPED BY CANCER EXPERTS AND REVIEWED REGULARLY.
Editorial Boards made up of experts in oncology and related specialties are responsible for writing and maintaining the cancer information summaries. The summaries are reviewed regularly and changes are made as new information becomes available. The date on each summary ("Date Last Modified") indicates the time of the most recent change.
PDQ ALSO CONTAINS INFORMATION ON CLINICAL TRIALS.
A clinical trial is a study to answer a scientific question, such as whether one 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. 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).
Date Last Modified: 2009-04-22
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