The National Cancer Institute at the National Institutes of Health have found that some survivors of cancer experience trauma-related symptoms similar to symptoms experienced by people who have survived highly stressful situations, such as military combat, natural disasters, violent personal attack (such as rape), or other life-threatening events. This group of symptoms is called post-traumatic stress disorder (PTSD) and includes avoiding situations related to the trauma, continuously thinking of the trauma, and being overexcited.
People with histories of cancer (survivors, family members, and caregivers) are considered to be at risk for PTSD. The physical and mental shock of having a life-threatening disease, of receiving treatment for cancer, and living with repeated threats to one’s body and life are traumatic experiences for many cancer patients. Likewise, close family members of cancer patients (parents, siblings, close friends, and others) and caregivers may identify with the illness and suffer from related traumatic symptoms.
Diagnosis and Symptoms
Post-traumatic stress disorder (PTSD) is defined as the development of certain symptoms following a mentally stressful event that involved actual death or the threat of death, serious injury, or a threat to oneself or others.
For the person who has experienced a diagnosis of cancer, the specific trauma that triggers PTSD is unclear. It may be the actual diagnosis of a life-threatening illness, aspects of the treatment process, test results, information given about recurrence, or some other aspect of the cancer experience. Learning that one’s child has cancer is traumatic for many parents. Because the cancer experience involves so many upsetting events, it is much more difficult to single out one event as a cause of stress than it is for other traumas, such as natural disasters or rape. The traumatic event may cause responses of extreme fear, helplessness, or horror and may trigger PTSD symptoms.
PTSD in cancer survivors may be expressed in these specific behaviors:
– Reliving the cancer experience in nightmares or flashbacks and by continuously thinking about it.
– Avoiding places, events, and people connected to the cancer experience.
– Being continuously overexcited, fearful, irritable, and unable to sleep.
To be diagnosed as PTSD, these symptoms must last for at least one month and cause significant problems in the patient’s personal relationships, employment, or other important areas of daily life. Patients who have these symptoms for less than one month often develop PTSD later.
Risk Factors, Protective Factors, and the Development of PTSD
As many as one third of people who experience an extremely upsetting event, including cancer, develop post-traumatic stress disorder (PTSD). The event alone does not explain why some people get PTSD and others don’t. Although there is no clear answer as to which cancer survivors are at increased risk of developing PTSD, certain mental, physical, or social factors may make some people more likely to experience it.
Individual and social factors
Individual and social factors that have been associated with a higher incidence of PTSD include younger age, fewer years of formal education, and lower income.
Certain disease-related factors are associated with PTSD:
– In patients who received a bone marrow transplant, PTSD occurs more often when there is advanced disease and a longer hospital stay.
– In adult survivors of bone cancer and Hodgkin lymphoma, people for whom more time has passed since diagnosis and treatment tended to show fewer symptoms.
– In survivors of childhood cancer, symptoms of PTSD occur more often when there was a longer treatment time.
– Interfering thoughts occur more often in patients who experienced pain and other physical symptoms.
– Cancer that has returned has been shown to increase stress symptoms in patients.
Mental factors may affect the development of PTSD in some patients:
– Previous trauma.
– Previous psychological problems.
– High level of general stress.
– Genetic factors and biological factors (such as a hormone disorder) that affect memory and learning.
– The amount of social support available.
– Threat to life and body.
– Having PTSD before being diagnosed with cancer.
– The use of avoidance to cope with stress.
Certain factors may decrease a person’s chance of developing PTSD. These include increased social support, accurate information about the stage of the cancer, and a satisfactory relationship with the medical staff.
How PTSD may develop
PTSD symptoms develop by both conditioning and learning. Conditioning explains the fear responses caused by certain triggers that were first associated with the upsetting event. Neutral triggers (such as smells, sounds, and sights) that occurred at the same time as upsetting triggers (such as chemotherapy or painful treatments) later cause anxiety, stress, and fear even when they occur alone, after the trauma has ended. Once established, PTSD symptoms are continued through learning. The patient learns that avoiding the triggers prevents unpleasant feelings and thoughts, so coping by avoidance continues.
Although conditioning and learning are part of the process, many factors may explain why one person develops PTSD and another does not.
It is important that cancer survivors and caregivers undergo a careful assessment for post-traumatic stress disorder (PTSD) so that early symptoms may be identified and treated. The timing of this assessment will vary with the individual patient. Cancer is an experience of repeated traumas and undetermined length. The patient may experience stress symptoms anytime from diagnosis through completion of treatment and cancer recurrence. In patients who have a history of victimization (such as Holocaust survivors) and who have PTSD or its symptoms from these experiences, symptoms can be started again by certain triggers experienced during their cancer treatment (for example, clinical procedures such as being inside MRI or CT scanners). While these patients may have problems adjusting to cancer and cancer treatment, their PTSD symptoms may vary, depending on other factors. The symptoms may become more or less prevalent during and after the cancer treatment.
Symptoms of PTSD usually begin within the first 3 months after the trauma, but sometimes they do not appear for months or even years afterwards. Therefore, cancer survivors and their families should be involved in long-term monitoring.
Some people who have experienced an upsetting event may show early symptoms without meeting the full diagnosis of PTSD. However, these early symptoms predict that PTSD may develop later. Early symptoms also indicate the need for repeated and long-term follow-up of cancer survivors and their families.
Diagnosing PTSD can be difficult since many of the symptoms are similar to other psychiatric problems.
For example, irritability, poor concentration, increased defensiveness, excessive fear, and disturbed sleep are symptoms of both PTSD and anxiety disorder. Other symptoms are common to PTSD, phobias, and panic disorder. Some symptoms, such as loss of interest, a sense of having no future, avoidance of other people, and sleep problems may indicate the patient has PTSD or depression. Even without PTSD or other problems, normal reactions to the cancer diagnosis and treatment of a life-threatening disease can include interfering thoughts, separating from people and the world, sleep problems, and over-excitability.
Questionnaires and interviews are used by health care providers to assess if the patient has symptoms of stress and to determine the diagnosis.
Other problems may also exist in addition to PTSD. These problems can include substance abuse, emotional problems, and other anxiety disorders, including major depression, alcohol dependence, drug dependence, social fears, and/or obsessive-compulsive disorder.
Effects of post-traumatic stress disorder (PTSD) are long-lasting and serious. It may affect the patient’s ability to have a normal lifestyle and may interfere with personal relationships, education, and employment. Because avoiding places and persons associated with cancer is part of PTSD, the syndrome may prevent the patient from seeking medical treatment. It is important that cancer survivors receive information about the possible psychological effects of their cancer experience and early treatment of symptoms of PTSD. Therapies used to treat PTSD are those used for other trauma victims. Treatment may involve more than one type of therapy.
The crisis intervention method tries to lessen the symptoms and return the patient to a normal level of functioning. The therapist focuses on solving problems, teaching coping skills, and providing a supportive setting for the patient.
Some patients are helped by methods that teach them to change their behaviors by changing their thinking patterns. Some of these methods include helping the patient understand symptoms, teaching coping and stress management skills (such as relaxation training), teaching the patient to reword upsetting thoughts, and helping the patient become less sensitive to upsetting triggers. Behavior therapy is used when the symptoms are avoidance of sexual activity and intimate situations.
Support groups may also help people who experience post-traumatic stress symptoms. In the group setting, patients can receive emotional support, meet others with similar experiences and symptoms, and learn coping and management skills.
For patients with severe symptoms, medications may be used. These include antidepressants, antianxiety medications, and when necessary, antipsychotic medications.
In my next post I plan to look at the “positive” side of having feelings of “Survivor Guilt”.
Here is a recent study on this topic: Survivor Guilt