Does diagnosis and treatment of cancer leave many people suffering from PTSD? Cancer is routinely portrayed as a psychological trauma in the media. Dramatizing it as traumatic is a standard way of introducing psychological studies of cancer. A diagnosis of cancer can be life-altering, but the assumption that it typically proves to be traumatic does not survive a confrontation with available evidence.
Moreover, the casual assumption that cancer is traumatic has been used to turn patients’ normal reactions to a diagnosis into a mental health issue, frighten persons who suffer from cancer, and promote bogus therapies. It has been used to prescribe how cancer patients should react to their disease, not just describe their reactions.
The invention of cancer as psychological trauma
It may come as a surprise that the connection between cancer and psychological trauma only appeared in the scientific literature around 1990. A search of “cancer” AND “(psychological trauma or PTSD)” on Thomson Reuters Web of Science can be used to create a graphic display in which only a few studies in the early 90s steadily increase thereafter.
The notion that cancer is traumatic came into play in the late 1980s when changes were contemplated to the DSM criteria for posttraumatic stress disorder (PTSD). Diagnosis of PTSD previously required exposure to an event outside the range of normal human experience. The DSM-III specifically ruled out chronic illness as such an event. However, it was anticipated that this exclusion would be removed in the next revision of DSM. The assumption was not that physical illness was necessarily traumatic, but if certain criteria were met, that physical illness could be considered a cause of PTSD.
Results from one of the DSM-IV PTSD field trials reported that cancer survivors had a higher rate of PTSD than comparison-controls from the community. However, it had a small sample because of a poor recruitment rate. A total of only 27 cancer survivors were matched with community controls, and the entire sample consisted of white suburbanite women. Only one of the cancer survivors and none of the community controls had current PTSD, but six of the survivors and none of the community controls met criterion for lifetime PTSD. This is hardly strong evidence, and there is no indication in this report whether any effort was made to assess whether the cancer survivors considered cancer outside the range of normal experience.
An early interview study of 160 breast cancer patients found low rates of PTSD, with only 3% of the women meeting stringent criteria for PTSD. Relaxing of the symptom criteria only yielded another six cases (3.8%). The authors concluded that cancer and its treatment might not fit well with the requirement of an event outside of normal human experience. In addition to interviewing patients, the investigators administered a number of self-report questionnaires and found that these breast cancer patients reported considerable psychological distress. Noting the discrepancy with the outcomes of a careful interview, the investigators cautioned against accepting self-report questionnaire data as equivalent to the results of the diagnostic interview.
The criteria for PTSD that were eventually adopted for DSM-IV in 1994 can be found here.
The DSM committee decided that assessment of an event as being outside the range of normal human experience was unreliable. So, two more precise requirements were set for the precipitating traumatic event: A1, that the event involved actual or threatened death or serious injury or threat to the physical integrity of self or others; and A2, that the person reacted with intense fear, helplessness or horror.
A diagnosis requires that a constellation of symptoms be present, not just a minimum number. There has to be at least one recurrence symptom such as a distressing recollection, dream, or feeling as if the traumatic event was reoccurring; at least three avoidance symptoms or numbing of general responsiveness; and at least two arousal symptoms such as difficulty falling asleep, difficulty concentrating or exaggerated startle responses. The symptoms additionally had to have lasted at least one month and to have caused clinically significant distress or impaired functioning.
As psychiatric diagnoses go, PTSD is unusual in requiring that a pattern of symptoms be associated with an event meeting particular criteria. The symptoms themselves are not particularly specific and overlap with those for major depression and generalized anxiety disorder. In fact, when researchers inquire about these symptoms without asking about an event, they often arrive at a diagnosis of major depression.
Applying the criteria for PTSD to cancer
A 2002 review found that studies relying on structured diagnostic interviews yielded estimates of the incidence of PTSD following cancer generally in the range of 2 to 6%, but higher rates (5 to 19%) when self-report questionnaires were used. Yet, we can find dramatic claims in the scientific literature that a third or more cancer patients suffer post-traumatic stress. The basis for these claims are either simply not documented, involve a “bracket creep” or stretching of the criteria for PTSD, or the investigators simply failing to do an adequate job of assessing symptoms and traumatic exposure in a representative sample of cancer patients.
A study by my group involved interviewing 115 consecutive patients with breast cancer in the waiting room of the cancer center. We assumed that all of these women would meet the A1 criterion of having faced an event involved actual or threatened death or threat to their physical integrity. But we assessed whether they had reacted with intense fear, helplessness or horror (A2), and 41% endorsed this item in the interview. However, only 4% of the overall sample met diagnostic criteria for PTSD. We concluded that A2 was a poor indicator of PTSD. Even though an initial intense emotional reaction to a diagnosis of breast cancer was common, PTSD was not. All women diagnosed with PTSD in our sample had a history of depression, raising the issue whether the “PTSD” merely represented a recurrence of major depression.
But most interview studies of PTSD and cancer ask only about these symptoms in connection with cancer, without inquiring whether patients actually consider their cancer experience to be traumatic. Other psychiatric disorders like pre-existing generalized anxiety disorder or major depression are supposed to be ruled out in making a diagnosis of PTSD, but that has not typically been done.
Overall, the most careful interview studies of cancer patients do not find rates of PTSD much different from studies of women in the general population that do not take cancer into consideration.
Reviews of using a trauma framework to understand the experience of most cancer patients have raised some troubling questions. Cancer is different than other events associated with PTSD. Other conditions like exposure to combat or crime or natural disasters are securely in the past. In contrast, cancer has a forward looking component, with cancer patients having legitimate concerns about upcoming treatment, prognosis and recurrence. Cancer involves continued exposure to threat and actual physical harm by way of disease process or treatment.
Symptoms connected to future events have a very different meaning than symptoms attached to events securely in the past. For instance, a Vietnam veteran endorsing the symptom “a sense of a foreshortened future” decades after the war had ended would be something very different than a cancer patient endorsing the same symptom. Most cancer patients who endorse the A2 criterion of having had a reaction of intense fear to their diagnosis also endorse this particular symptom, but do not go on to meet the criteria for PTSD.
And it is difficult to specify exactly what the event is in cancer. There is the diagnosis, but then there are also treatment decisions, effects of treatments including disfiguring surgery, lingering physical side effects, and recurrences. A number of the symptoms of PTSD like sleep problems distractibility and trouble concentrating can represent simply direct consequences of treatment.
The trouble with self-report questionnaires
Most studies identified in a literature search for “cancer” and “PTSD” involve self-report questionnaires. Such studies are popular because they require less resources than a study involving systematic diagnostic interviews. A researcher can simply have oncology nurses pass out questionnaires or send a research assistant to the waiting room and patients complete questionnaires while they wait for their appointments. Questionnaire studies consistently produce higher estimates of the prevalence than what is obtained when someone actually talks to patients. There is the strong bias in what get published in the scientific literature, with a favoring of higher rather than lower estimates of phenomena. The PTSD literature is no exception. And journalists are more interesting in hearing about a study that claims lots of PTSD among cancer patients than a study that reports little PTSD. So conditions are ripe for publicizing exaggerated estimates of PTSD from questionnaire studies.
But can we infer PTSD from a questionnaire? Questionnaires do not provide an opportunity for investigators to explain to patients what is meant by specific questions or to probe patients’ responses in an interview. Most importantly, there is no opportunity to determine the nature of the symptoms or to rule out other disturbance, such as major depression, crucial to the diagnosis of PTSD. Not surprisingly, questionnaires yield a high proportion of false positives when compared to a diagnostic interview.
The two most commonly used questionnaires with cancer patients are the PTSD Checklist Civilian Version (PCL-C) and Impact of Events Scale (IES). We need to keep in mind that in interpreting results obtained with questionnaire assessments of PTSD and PTSD symptoms, we are relying on validation data from other, very different populations. For instance, the strongest claims for the validity of the PCL-C come from use from earlier versions of the questionnaire with combat veterans who had their combat experience behind them, but who had a higher probability of PTSD.
Researchers often forget that it is not questionnaires that are validated, but rather their use with a particular population. And, really, when comparisons to psychiatric diagnoses are important, it is not questionnaires with particular populations that are being validated, but particular cutpoints that may differ greatly across populations.
The PCL-C is has 17-items tied to the DSM criteria. Take a look and tried to imagine how a cancer patient would respond if only given the vague instruction that they should answer with respect to cancer. The more validated Posttraumatic Stress Disorder Checklist-Military (PCL-M) anchored the responses with respect to “a stressful military experience.” That was clearer and securely in the past for veterans.
Look also at how vague and nonspecific the specific items are and whether they could apply to a normal reaction to diagnosis and treatment of cancer. Some of the items such as 1 and 4 or 4 and 5 could be endorsed on the basis of the same experience. Consider not only the dilemma of the patient trying to figure out how to complete the questionnaire, but researchers trying to make sense of the responses when the patient is no longer there to probe. Note too how some of this vagueness is lost when we focus on responses of “moderately” to “extremely”. But what is to be made of “a little bit” or “moderately”, the more typical responses of cancer patients?
I doubt that many cancer researchers ever stop and ponder the appropriateness of their instruments in this fashion. Rather, they assume that cancer is traumatic without checking out the assumption with the patients they are studying and they assume their measures of valid simply because they have been used a lot previously. So, they start with some conventional assumptions, don’t really put them to a test in choosing an off-the-shelf questionnaire. When they write up their results, they can assume that reviewers will mostly share their unexamined assumptions.
The IES can be found here and it is even worse than the PCL-C for studying cancer patients. It is notoriously nonspecific in the content of its items. Some items are quite neutral, like “I had dreams about it.” Uncritical use of the IES risks of casting normal reactions to a diagnosis of cancer or even the physical symptoms of cancer treatment as symptoms of a psychiatric disorder.
The IES was not originally constructed to diagnose PTSD and it misses some constellations of symptoms contributing to a diagnosis. It misses hyperarousal symptoms altogether and does not cover some avoidance or intrusion symptoms. was supposed to have separate intrusive thoughts and avoidance subscales, but this factor structure does not hold up in its use with cancer patients. Rather, the items seem to converge on a general distress factor.
One investigator administered the IES to a group of college students who were asked to fill it out with respect to a TV program that they had particularly disliked in the past week. Not necessarily a frightening program, only a bad one. The students scored in a range that substantially overlapped with the scores obtained from breast cancer patients. This says a lot about the nonspecificity of the IES and the difficulty making sense of responses.
Partial PTSD and subsyndromal PTSD syndromes
Researchers frequently find that average scores for cancer patients are not in the range that they anticipated and that even with questionnaires, the prevalence of PTSD is low. Not to be deterred, researchers have postulated partial PTSD and subsyndromal PTSD.
For instance, one study found that the prevalence of PTSD was low in persons who were previously diagnosed with Hodgkin’s lymphoma and that the rates were no higher than among their siblings. The researchers constructed “partial PTSD” from patients who met the A1 criterion of the direct experience of an event involving death, injury, or threat to the physical integrity of oneself or another person and symptoms from only two of the three needed clusters for a diagnosis of PTSD (i.e., reexperiencing, avoidance, arousal). So, someone could meet a diagnosis of partial PTSD by endorsing feeling that future plans would not come true and by being upset when reminded of the events or having thoughts are images of it.
Note a couple of things about the study and its results. The A2 criterion was dropped and patients did not need to have the minimum criterion of number of symptoms within the clusters, only to have one symptom in that cluster. Finally, most of the patients who endorsed A1 criterion for cancer endorsed another event in their lives as having been the worst in their lives. Although the cancer patients were labeled “survivors,” a quarter of them experienced a relapse since last assessment. Thus, the threat of cancer was real in the current lives, not securely in the past.
The researchers nonetheless concluded that their finding
“underscores the importance of future research detailing the psychological and functional outcomes and survivors with partial PTSD and of careful clinical practice that assesses for functional impairment secondary partial PTSD symptomatology, and male and female survivors, even years after completion of therapy.”
I think this study, which is rather typical, but even more careful than most, shows how resistant the idea of cancer being traumatic is to being refuted by data. Furthermore, when one examines this and similar studies, one gets the impression that little recognition is being given to persons who have been diagnosed with cancer continuing to have a realistic threat in their lives.
Just what is partial PTSD, anyway? We cannot assume patients who endorse a few nonspecific symptoms have a budding posttraumatic stress disorder–Most will not develop it—anymore than we can said that a couple of weeks of sore throat represents partial esophageal cancer.
Normal reactions to a diagnosis of cancer
After receiving a diagnosis of breast cancer, about a third of women, maybe slightly more, will score above a cutpoint on a measure of general distress. Efforts to distinguish between anxiety and depression symptoms with self-report have generally proved unsuccessful. Items intended to go with the anxiety subscale often correlate as highly with the depression subscale and vice versa. Assessed a few months afterwards, most formerly distressed cancer patients will not still be distressed, even if they have not gotten formal mental health interventions. It’s estimated that only about 8% of cancer patients have persistent distress, and such chronic distress represents other things going on in their lives or pre-existing vulnerability to psychiatric disorder.
It’s not that cancer patients don’t benefit from support and attention in greater understanding of their illness and its treatments, it’s just that specially mental health treatment is not generally indicated nor even accepted.
In an as yet unpublished study, my group systematically screened cancer patients for distress and offering enrollment in a clinical trial providing a free problem-solving intervention to those who were distressed. As in other studies, we find that little more than a third of the patients were distressed enough to qualify for the intervention. But few of them were interested. We estimate that we have to spend 28 hours of screening in order to get one patient into the study.
The “third or more are distressed” may sound high, but it is the same proportion of patients scoring above the cutpoint for distress in primary care settings. The difference between the waiting rooms of cancer care in the primary care is that many of the patients in cancer care are displaying a reaction to an acute event that will dissipate within the normal support and attention they get in cancer care.
You would never know from the introductions to most papers on distress in cancer patients that more cancer patients score below the cutpoint for significant distress than above.
Self-report measures of “posttraumatic stress” are strongly correlated with self-report measures of general distress, more so than they are with interview measures of PTSD. It may sound more impressive to label this emotional distress as posttraumatic stress, but it is pretentious and misleading. Posttraumatic stress disorder, when properly diagnosed, is a rather chronic condition with accumulating impairments in social and personal functioning if its sufferers go untreated. It gives the wrong message to cancer patients to label them as having posttraumatic stress.
There are empirically recommended treatments for PTSD, many involving re-exposure to the threatening situation and cognitive reprocessing over and over again until the situation is judged not as threatening. I don’t think that such exposure therapy or cognitive reprocessing therapy has been tried with cancer patients, and I doubt that many would accept it. But that would be the recommendation if we took seriously the notion that cancer patients were suffering full or partial PTSD.
Misapplications of the trauma framework to cancer
There are plenty of examples of misunderstanding and misinformation stemming from application of a trauma framework to cancer.
In a past blog post, I showed how the cancer patients experiencing relapses and re-treatments were misunderstood as having psychiatric issues. Researchers felt that there was a “strong message” for mental health interventions to be provided, based on patient endorsements of items that probably represented return of physical symptoms and side effects of treatment for recurrent cancer.
It would seem perfectly normal for these patients to be physically sickened and dismayed by the recurrences and renewed treatment. I really doubt most would want to see a psychiatrist.
In another blog post, I showed how researchers frightened cancer patients with the suggestion that any emotional response registered on the IES might accelerate the progression of their cancer and death. Press coverage of the study in a newsletter to psychiatrists was headlined No Time to Waste: Avoidant Coping Style Scrambles Circadian Rhythms in Breast Cancer Patients. The press coverage actually conveyed the hype and exaggerations of the peer-reviewed article rather accurately. Elevations in the the IES were related to sleep patterns, with the inference being made that there was ‘no time to waste’ for breast cancer patients to seek mental health interventions to reduce their emotional distress. This is irresponsible nonsense, but will succeed in misleading cancer patients who want to do everything they can to survive their cancer.
Both of these examples come from respectable peer-reviewed journals.
There’s a whole variety of not so respectable sources that offer bogus treatments to patients, selling them on the idea that somehow cancer is a kind of psychosomatic disease, so that addressing the psychological concerns will extend their lives. The offensive message is that if cancer patients do not get better control of their emotional experience, they are responsible for aggravating their physical health.
Then there is a whole literature prescribing how patients should respond emotionally to cancer. Cancer may be traumatic, they are told, but it is incumbent upon them to find a benefit in it an opportunity for personal growth. There is no evidence that patients who report benefits from having cancer or growing psychologically from the experience are anymore adjusted than patients who do not. And there is considerable evidence that claims of positive psychological changes from having cancer are often defensive illusions. I will have more to say about that in future blog posts, but with great humor and insight Barbara Ehrenerich has described her experiences being forced to leave a support group when she held to her idea that there was no benefit to cancer and rather than wanting to find growth from it, she was simply mad as hell. I recommend her book Bright-sided (titled Smile or Die in Europe) or a review that can be found here.
Postscript: It remains amazingly easy to publish inaccurate nonsense in high impact journals about cancer being routinely traumatic. For discussion of yet another example, see Will understanding cancer as a trauma improve outcomes for low income, minority women?