**1. Introduction**

226 Post Traumatic Stress Disorders in a Global Context

[26] Roxanne Dryden-Edwards. Posttraumatic Stress Disorder.

Posttraumatic stress disorder or PTSD is an extreme psycho-physiological response disorder that may occur in individuals who are exposed to a potentially traumatic event that can involve the subjectively profound *threat of loss*… of life or limb. To receive a PTSD diagnosis, reactions to the catastrophic or traumatic stressor must involve profound fear, helplessness, or horror. Furthermore, such individuals have to experience symptoms from three separate yet co-occurring symptom clusters. These clusters or domains include: 1) intrusive recollections or the re-experiencing of the event with accompanied intense psychological distress or physiologic reactivity; 2) persistent avoidance of activities, thoughts as well as feelings associated with the traumatic event; and, 3) increased or extreme arousal that may include an exaggerated startle response, hypervigilance, or insomnia (American Psychiatric Association, 1994; Uddin et al., 2010) To justify a PTSD diagnosis, symptoms must be present for at least one month, and impair an individual's interpersonal, occupational, or social functioning (American Psychiatric Association, 1994). PTSD has been described as a specific phenotype that develops as the result of a failure to contain the normal stress response (Yehuda & LeDoux, 2007), resulting in dysregulation of the hypothalamic– pituitary–adrenal or HPA axis, a major stress response system of the body that interacts with the immune system to maintain homeostasis (Wong, 2002). PTSD-affected and unaffected individuals have distinct expression patterns in genes involved in immune activation (Segman et al., 2005; Zieke et al., 2007), and in genes that encode neural and endocrine proteins (Segman et al., 2005; Yehuda et al., 2009). Above all, PTSD is both an external and internal experience; that is, PTSD is an external catastrophic or traumatic event and an internal psycho-physiological experience.

#### **1.1 Trauma goes public**

Once upon a time in the west, PTSD was known as a psychiatric disorder associated most frequently with Vietnam War veterans as exemplified by the label of *post-Vietnam syndrome*  (Friedman, 1981). This, despite the fact that similar war-related traumatic experiences of American soldiers who served in Vietnam can be found as far back as Homer's epic account of Achilles in *The Iliad* (Shay, 1994). Yet, while long-term psychiatric conditions were witnessed in previous war veterans, PTSD failed to permeate public consciousness until Vietnam. Indeed, Mezey and Robbins point out that PTSD has socio-economic and political implications since veterans are the group most associated with this disorder (2001). With

already decided privately was cancer?... Was it a procedure such as the biopsy?...Was it a treatment regimen? Or was it side effects from treatment or the disease? Regardless, the bottom line is that the threat of death is real and present at all times. Secondly, another variation of the posttraumatic experience related to cancer is the time zone of traumaticinducing reality. Traditional stressor events, which are thus *re-experienced*, obviously are located in the past, and are primarily retrospective trauma. Cancer-related PTSD, however can be viewed as being bidirectionally traumatic in terms of subjective time: retrospective with memories of the past, yet also prospectively traumatic with a truncated future that is equally as threatening, helpless, and horrifying. The integrity of self is threatened because self is in clear and present---and future danger of not existing. The traumatizing reality that one's long-term plans, hopes or dreams for the future such not seeing a child graduate from high school, get married, etc., or worse---that one will die an agonizing and painful death are forward experiences in the timeline of trauma that personifies a

Thirdly, another variation of cancer-related PTSD is the fact that the traumazing agent or perpetrator is not external; rather, it is internal in the form of a biological, pathophysiological disease with threat of recurrence, which can lead to a sense of ambivalent betrayal of self. The rude reality is that trauma is experienced in the past, in the present, and in the future tense of experiencing. Moreover, being a cancer *survivor* does not dispell distress of life-threatening trauma or mean that one is safe and sound. In addition to anxiety and depressive symptomatology, pervading concerns about prognosis, treatment options and effects, or ruminating fears about upcoming doctor appointments and disease recurrence, are all common sources of distress that can plague cancer patients in survivorship long after treatment has ended (Andrykowsk, et al., 2008; Montgomery et al., 2003). For example, acute or sub-acute symptoms may erupt with each doctor's visit, routine check-up, or getting a mammogram, etc., from post-traumatic cues of a patient's previous cancer experience. Unfortunately, routinized triggers can become embedded within the healthcare system, to where a cycle of nosocomial re-triggering or institutional retraumatization is conceivably possible. Indeed, the original traumatic-inducing event may be lost among the chronic cascading triggers---even in the absence of recurrence or a new

The addition of "life threatening" illness to official PTSD criteria is exactly that---lifethreatening. The spontaneous potential of traumatic triggers and the pervasive pain from living a disrupted life with PTSD---be it from a traditional event or a life-threatening illness with recurrence---is equivocal when it comes to human physical and mental suffering. In sum, cancer-related PTSD is no less valid or more ambiguous than traditional stressor events, for trauma by any other name---cancer--- *is* trauma despite variation of

A brief review of general symptom clusters (see Table 1) (Friedman, 2006) and diagnostic criteria A – F (Table 2) (American Psychiatric Association, 1994, 2000), will be presented with tables to make the information more user-friendly. In order to be diagnosed with PTSD due to the potentially [precipitating] traumatic event of being diagnosed with a malignant

foreshortened future.

primary site of malignancy.

**3. DSM in brief: Diagnostic criteria for PTSD** 

disease process, all of the six criteria, that is, A – F, must be satisfied.

etiology.

Vietnam, PTSD exploded into popular culture, becoming a subject for the general public in many films: *Apocalypse Now (1979)*, *Born on the Fourth of July (1989), Casualties of War (1989), The Deer Hunter (1978), First Blood (1982), Full Metal Jacket (1987), Good Morning, Vietnam (1987), the Green Berets (1968), Hamburger Hill (1987), Hanoi Hilton (1987), Jacob's Ladder (1990), the Killing Fields (1984), and Platoon (1986) (*Bealle, 1997)*.* In 1980, posttraumatic stress disorder (PTSD) was recognized as an official classification of a psychiatric disorder in the third edition of the *Diagnostic and statistical manual of mental disorders* (DSM-III*)* (American Psychiatric Association, 1980). This inclusion of PTSD in DSM-III basically served to legitimize a psychological disorder by re-labeling what had been described in the forgotten past as "soldier's heart," "shell shock," "railway spine, "war neurosis," "traumatic neurosis," "combat trauma," or "combat fatigue" (Bealle, 1997). The growth of psychiatric epidemiology enabled PTSD investigations to include samples of general populations in the United States and in other countries. In the U.S. during the past decade, trauma "goes public" was nowhere more evident than in the aftermath of 9/11 with the attack on the Twin Towers. The public traumatic event of "9/11 changed the picture of PTSD, and transformed it from being simply a mental disorder that psychiatrists deal with to a *public health* issue;" that is, "for the first time, psychiatric leaders pondered how factors such as media coverage, community cohesion, and poverty may affect the public's mental health when mass disaster strikes" (Brandt, 2011; Schuster et al., 2001).

#### **2. PTSD in the context of cancer**

The potentially traumatic and protracted nature of cancer's disease course and treatment received acknowledgment in 1994, when the *Diagnostic and statistical manual of mental disorders,* fourth edition (DSM-IV), revised events that may precede a posttraumatic response. Specifically, "life threatening illness" was added to the criteria as a potentially precipitating event for the development of posttraumatic stress disorder or PTSD (American Psychiatric Association, 1994). Previously, criteria has centered upon *acute* events such as war, natural disasters, automobile accidents, and rape. This new inclusion of a *chronic* and possible terminal disease process into the diagnostic criteria, indeed, was a significant change as to precipitating events associated with PTSD. First, diagnostic criteria for PTSD within the context of malignant disease will be summarized. Then, a review of the literature with current PTSD prevalence will follow with prevalence rates for identified cancer types and age groups as adequate data and number of studies permit, risk factors, and lastly, concluding comments.

#### **2.1 Trauma by any other name**

Before reviewing diagnostic criteria, the debate about malignant illness as a traumatic event needs to be addressed (e.g., Kwekkeboom & Seng, 2002; Palmer et al., 2004), in order to highlight that variation is not negation of a disorder's existence. Events such as rape, assault, or natural disasters, etc., tend to be singular events restricted to a finite period during which the external agent ceases to be acutely present in real living time. It may be argued that cancer is ambiguous as a stressor event, for malignancy does not fit neatly into an objective timeline with a discrete beginning and ending. One may ask, what event truly was the stressor event? Was it the public *confirmation* of the diagnosis, of which, one may have

Vietnam, PTSD exploded into popular culture, becoming a subject for the general public in many films: *Apocalypse Now (1979)*, *Born on the Fourth of July (1989), Casualties of War (1989), The Deer Hunter (1978), First Blood (1982), Full Metal Jacket (1987), Good Morning, Vietnam (1987), the Green Berets (1968), Hamburger Hill (1987), Hanoi Hilton (1987), Jacob's Ladder (1990), the Killing Fields (1984), and Platoon (1986) (*Bealle, 1997)*.* In 1980, posttraumatic stress disorder (PTSD) was recognized as an official classification of a psychiatric disorder in the third edition of the *Diagnostic and statistical manual of mental disorders* (DSM-III*)* (American Psychiatric Association, 1980). This inclusion of PTSD in DSM-III basically served to legitimize a psychological disorder by re-labeling what had been described in the forgotten past as "soldier's heart," "shell shock," "railway spine, "war neurosis," "traumatic neurosis," "combat trauma," or "combat fatigue" (Bealle, 1997). The growth of psychiatric epidemiology enabled PTSD investigations to include samples of general populations in the United States and in other countries. In the U.S. during the past decade, trauma "goes public" was nowhere more evident than in the aftermath of 9/11 with the attack on the Twin Towers. The public traumatic event of "9/11 changed the picture of PTSD, and transformed it from being simply a mental disorder that psychiatrists deal with to a *public health* issue;" that is, "for the first time, psychiatric leaders pondered how factors such as media coverage, community cohesion, and poverty may affect the public's mental health when mass disaster

The potentially traumatic and protracted nature of cancer's disease course and treatment received acknowledgment in 1994, when the *Diagnostic and statistical manual of mental disorders,* fourth edition (DSM-IV), revised events that may precede a posttraumatic response. Specifically, "life threatening illness" was added to the criteria as a potentially precipitating event for the development of posttraumatic stress disorder or PTSD (American Psychiatric Association, 1994). Previously, criteria has centered upon *acute* events such as war, natural disasters, automobile accidents, and rape. This new inclusion of a *chronic* and possible terminal disease process into the diagnostic criteria, indeed, was a significant change as to precipitating events associated with PTSD. First, diagnostic criteria for PTSD within the context of malignant disease will be summarized. Then, a review of the literature with current PTSD prevalence will follow with prevalence rates for identified cancer types and age groups as adequate data and number of studies permit, risk factors, and lastly,

Before reviewing diagnostic criteria, the debate about malignant illness as a traumatic event needs to be addressed (e.g., Kwekkeboom & Seng, 2002; Palmer et al., 2004), in order to highlight that variation is not negation of a disorder's existence. Events such as rape, assault, or natural disasters, etc., tend to be singular events restricted to a finite period during which the external agent ceases to be acutely present in real living time. It may be argued that cancer is ambiguous as a stressor event, for malignancy does not fit neatly into an objective timeline with a discrete beginning and ending. One may ask, what event truly was the stressor event? Was it the public *confirmation* of the diagnosis, of which, one may have

strikes" (Brandt, 2011; Schuster et al., 2001).

**2. PTSD in the context of cancer** 

concluding comments.

**2.1 Trauma by any other name** 

already decided privately was cancer?... Was it a procedure such as the biopsy?...Was it a treatment regimen? Or was it side effects from treatment or the disease? Regardless, the bottom line is that the threat of death is real and present at all times. Secondly, another variation of the posttraumatic experience related to cancer is the time zone of traumaticinducing reality. Traditional stressor events, which are thus *re-experienced*, obviously are located in the past, and are primarily retrospective trauma. Cancer-related PTSD, however can be viewed as being bidirectionally traumatic in terms of subjective time: retrospective with memories of the past, yet also prospectively traumatic with a truncated future that is equally as threatening, helpless, and horrifying. The integrity of self is threatened because self is in clear and present---and future danger of not existing. The traumatizing reality that one's long-term plans, hopes or dreams for the future such not seeing a child graduate from high school, get married, etc., or worse---that one will die an agonizing and painful death are forward experiences in the timeline of trauma that personifies a foreshortened future.

Thirdly, another variation of cancer-related PTSD is the fact that the traumazing agent or perpetrator is not external; rather, it is internal in the form of a biological, pathophysiological disease with threat of recurrence, which can lead to a sense of ambivalent betrayal of self. The rude reality is that trauma is experienced in the past, in the present, and in the future tense of experiencing. Moreover, being a cancer *survivor* does not dispell distress of life-threatening trauma or mean that one is safe and sound. In addition to anxiety and depressive symptomatology, pervading concerns about prognosis, treatment options and effects, or ruminating fears about upcoming doctor appointments and disease recurrence, are all common sources of distress that can plague cancer patients in survivorship long after treatment has ended (Andrykowsk, et al., 2008; Montgomery et al., 2003). For example, acute or sub-acute symptoms may erupt with each doctor's visit, routine check-up, or getting a mammogram, etc., from post-traumatic cues of a patient's previous cancer experience. Unfortunately, routinized triggers can become embedded within the healthcare system, to where a cycle of nosocomial re-triggering or institutional retraumatization is conceivably possible. Indeed, the original traumatic-inducing event may be lost among the chronic cascading triggers---even in the absence of recurrence or a new primary site of malignancy.

The addition of "life threatening" illness to official PTSD criteria is exactly that---lifethreatening. The spontaneous potential of traumatic triggers and the pervasive pain from living a disrupted life with PTSD---be it from a traditional event or a life-threatening illness with recurrence---is equivocal when it comes to human physical and mental suffering. In sum, cancer-related PTSD is no less valid or more ambiguous than traditional stressor events, for trauma by any other name---cancer--- *is* trauma despite variation of etiology.

#### **3. DSM in brief: Diagnostic criteria for PTSD**

A brief review of general symptom clusters (see Table 1) (Friedman, 2006) and diagnostic criteria A – F (Table 2) (American Psychiatric Association, 1994, 2000), will be presented with tables to make the information more user-friendly. In order to be diagnosed with PTSD due to the potentially [precipitating] traumatic event of being diagnosed with a malignant disease process, all of the six criteria, that is, A – F, must be satisfied.

Criterion C: Avoidant/Numbing Persistent avoidance of stimuli associated with the

following:

trauma

others

Criterion D: Hyperarousal Persistent symptoms of increased arousal (not

in significant activities

to have loving feelings)

**D3**. Difficulty concentrating

D) is more than one month.

**D5**. Exaggerated startle response

other important areas of functioning.

**D4**. Hypervigilance

Criterion E: Duration Duration of the disturbance (symptoms in B, C, &

Criterion F: Functional Significance The disturbance causes clinically significant

Table 2. DSM Criteria for PTSD (American Psychiatric Association, 1994, 2000)

normal lifespan

dissociative flashbacks

an aspect of traumatic event

**B2**. Recurrent distressing dreams of the event **B3**. Acting or feeling as if the traumatic event were recurring with sense of re-experiencing it again;

**B4**. Intense psychological distress at exposure to internal or external cues that symbolize or resemble an aspect of the traumatic event **B5**. Physiological reactivity at exposure to

internal/external cues that symbolize or resemble

trauma and numbing of general responsiveness (not present before the trauma, in this case, cancer) as indicated by three or more of the

**C3**. Inability to recall an important aspect of the

**C4**. Markedly diminished interest or participation

**C5**. Feeling of detachment or estrangement from

**C6**. Restricted range of affect (for example, unable

**C7**. Sense of a foreshortened future, (does not expect to have a career, children, marriage, or a

present before the trauma, in this case, cancer) as indicated by two or more of the following: **D1**. Difficulty falling or staying asleep **D2**. Irritability or outbursts of anger

distress or impairment in social, occupational or

**C1**. Efforts to avoid thoughts, feelings, or conversations associated with the trauma **C2**. Efforts to avoid activities, places or people

that arouse recollections of the trauma


Table 1. Symptom Clusters for PTSD (Friedman, 2006)


Traumatic nightmares

thoughts/feelings Avoiding trauma-related activities/places/people

Diminished interest

Irritability

following were present:

Criterion A: Stressor Exposed to a traumatic event in which *both* of the

or horror Criterion B: Intrusive Recollection The traumatic event is re-experienced persistently

Hypervigilance

 Trauma-evoked psychological distress Trauma-evoked physiological reactions

Amnesia of trauma-related memories

Difficulty in focusing/concentrating

Exaggerated startle reaction

**A1.** Person experienced, witnessed or was confronted by an event that involved actual or threatened death or serious injury, or a threat to the physical integrity of self or others. The traumatic event includes diagnosis of a lifethreatening illness such as cancer that threatened one's life and/or physical integrity; involved either direct personal experience (such as being the patient) witnessing, confronting, or learning about the illness experience through a family member or close friend—which may pose a threat

to the integrity of a significant other

in at least *one* of the following ways: **B1.** Recurrent and intrusive distressing recollections of the event, including images, thoughts, or perceptions; thus, a distressing cancer event such as a diagnosis, has occurred for one to have distressing recollections about such an event

**A.2** Response involved intense fear, helplessness

 Detached or estranged feelings Restricted range of affect Sense of foreshortened future

Flashbacks

Cluster Specific Symptoms

Hyperarousal Insomnia

Table 1. Symptom Clusters for PTSD (Friedman, 2006)

Reexperiencing Intrusive recollections

Avoidant/Numbing Avoiding trauma-related


Table 2. DSM Criteria for PTSD (American Psychiatric Association, 1994, 2000)

based on official DSM guidelines, that is, DSM criteria had been applied. Also included were studies where participants were current patients at the time of data collection or were cancer survivors of 60 months (the five-year marker) or less since the end of treatment; this was done in an effort to reduce the potential wide range of survivor time variation (i.e., survivors of 13-years, 2-years, etc). No limitations were placed on the number of participants, the study design, or whether a control group was included; studies reporting

A total of 11 studies met criteria, which were based on interview data collection (See Table 3). The current PTSD diagnostic gold standard remains a clinical interview that is based on the predefined criteria in the DSM (American Psychiatric Association, 1994).Three of the studies involve participants with a mixture of cancer diagnoses excluding breast malignancy (Akechi et al., 2004; Kangas et al., 2005; Widows et al., 2000). The remaining eight studies investigating adult cancer-related PTSD include breast cancer patients at various points in the disease process (Andrykowski et al., 1998; Gandubert et al., 2009; Green et al., 1998; Luecken et al., 2004; Mehnert & Koch, 2007; Mundy et al., 2000; Okamura et al., 2005; Shelby et al., 2008). Despite advances in breast cancer diagnosis and treatments, it remains a monumental stressor in these women's lives that continues to elicit greater distress than any other medical diagnosis (Shapiro et al., 2001). This distress is now recognized as an integral component of a patient's clinical presentation (Bultz & Carlson, 2006); additionally, depression, anxiety, and posttraumatic stress disorder (PTSD) symptoms occur somewhere between 20 and 66% of women in the first 12 months alone after their diagnosis (Burgess et al., 2005; Vos et al., 2004). Such psychological difficulties in response to the challenge of cancer appear congruent with certain pre-cancer factors that may set the stage for patient vulnerability. Specifically, posttraumatic stress disorder cases have been found to be distinguished by a previous history of violent traumas as well as psychological problems such as anxiety disorders that predate the diagnosis of cancer (e.g.,

The sample sizes in the eight breast cancer studies range from 37 to 160 participants with a mean of 93 participants and the median of 78 participants. Prevalence rates for current cancer-related PTSD range from 0% to 16.2% with a mean of 4.6% and a median of 2.75%. Sample sizes for the three studies of mixed cancer types range from 82 to 209; the mean of participants in these studies is 131 participants with a median of 102 participants. The prevalence rates for current cancer-related PTSD in these studies range from 0% to 22% with

In sum, these findings are congruent with previous estimates of current cancer-related PTSD prevalence in adult patients, that is, in women with breast cancer or mixed samples of gender with head, neck or lung cancer ranging from 0 to 32% (Hamann et al., 2005). Several points need to be acknowledged. First, the majority of studies---as tends to be the case in the area of psychosocial oncology literature---involved women with breast cancer. Thus, most of the current knowledge regarding PTSD in the context of malignant disease is based upon this cancer population with frequently low sample sizes. Basically, this means that caution is needed, for generalizability of such results do not apply to other disease populations or to those with other types of cancer. Also, the majority of these investigations were crosssectional studies with time variation as to time of assessment from either diagnosis or

qualitative data were excluded.

**4.2 Results** 

Shelby et al., 2008).

a mean prevalence rate of 9% and a median of 5%.

### **3.1 Criteria A - C**

The *DSM's* first criterion, A, relates to PTSD's conceptualization as a stress-related response syndrome where the person experienced an event that threatened his/her life or physical integrity (American Psychiatric Association, 1994, 2000). Also, this criterion includes vicarious traumatization, that is, the witnessing of traumatic events as well as hearing traumatic news or unexpected occurrences about loved ones. For example, related PTSD investigations have expanded to include not only the patients themselves, but also, loved ones affected by the experience of cancer in another, for example, parents of children diagnosed with malignancy as well as partners, siblings or significant friends of cancer patients (e.g., Alderfer et al., 2010; Poder, Ljungman, & von Essen, 2008).

Criterion B involves persistent re-experiencing of the cancer experience (including the intrusive thoughts of symptoms, the way diagnosis was communicated, impending death or experience of review visits), for example, recurrent and intrusive memories or images in the form of flashbacks or nightmares. Noticeable physical reactions may present, such as breaking out in a sweat, feeling light-headed or nauseous, having palpitations, or breathing gets fast and shallow. Criterion C is persistent avoidant or emotional numbing strategies that serve the purpose of blocking internal or external stimuli reminiscent of the traumatic event, such as avoiding certain people, places, or perhaps even the music playing in the background when the event was occurring.
