Some of us who have a cancer diagnosis are able to treat it as merely a bump in the road. Whether because it’s caught at an early stage, or their treatments are relatively simple, or their support networks are extraordinarily strong, or some combination of all, these folks can deal with their cancer matter-of-factly and move on.
Others of us are not so fortunate. The perceived loss of control of our bodies; the staggering and sometimes unaffordable cost of treatment, financial and otherwise; the real threat of mortality: for some of us, these factors and others make the condition itself difficult to handle psychologically. And for yet another segment of the population with cancer, these factors can in turn contribute to the development of post-traumatic stress disorder (PTSD).
Although I am not a mental health professional, let me propose a working definition of PTSD for our purposes here. If you choose to dispute my lay terminology in the comments, that’s fine; I certainly don’t shy away from learning more precision.
In some ways, an older (DSM-III-R, 1987) definition of PTSD—as a response to a stressor that is “outside normal human experience”—resonates most strongly with me in terms of a connection to cancer than the newer versions, which tend to be more specific. [The trigger event(s) for PTSD usually involve, one way or another, a real sense that one’s life is in danger. That’s why the populations originally considered most likely to experience PTSD were combat troops, first responders, survivors of severe natural disasters, and survivors of domestic violence and/or sexual abuse. Also see post rational’s comment below for a concise description of psychic numbness.] While the rate of cancer diagnoses has increased, partly due to our aging population and partly due to factors whose share of responsibility remains controversial, the reaction of many who are diagnosed with it still includes an element of surprise and disbelief. That seems especially true for those who have little to no family history of cancer, those who are diagnosed with cancer as a child or young adult (and their parents/caregivers), and those whose diagnosis of cancer occurs when it is already advanced.
There are three broad categories of psychological symptoms associated with PTSD: intrusive thoughts; avoidance behaviors; arousal. For “intrusive thoughts,” think flashbacks, though other types of disrupted cognition are also pertinent. Avoidance behaviors include (often unconsciously) structuring one’s life in order to limit, if not eliminate, the encountering of “triggers” that might remind one of the traumatic incident(s), as well as psychic numbing and other attempts at self-protection. And arousal can encompass heightened responsiveness to sensory stimuli, along with sleep difficulties and irritability, among other reactions.
One other important element of PTSD concerns its late or persistent onset. It’s considered psychologically healthy to be able to bounce back from a trauma, even a major one, within several months from the event. If symptoms persist, or emerge suddenly, several months afterwards, then the diagnosis potentially comes into play.
Until relatively recently—the late 1990s, from what I can tell by tracking back PubMed-related articles and the DSM timeline of revisions—the concept of relating PTSD to cancer was not generally accepted or studied. Since then, there has been increased interest in studying it, with researchers from several fields besides psychology or oncology, paying particular attention to several distinct populations: adults with advanced cancers; adults who have survived childhood cancers; caregivers, particularly mothers, for children with cancer; and bereaved family members of those who have died from cancer.
The estimates of occurrence among these populations vary dramatically. Early on, based on one 1996 study whose abstract I read in PubMed, the estimates seemed low, starting at 4% of a small study group with current symptoms of PTSD--but the researchers concluded that their population had a lifetime rate higher than would be found in the “healthy” population. More recently, in a 2013 study done on 1,139 breast cancer patients from around the country, the prevalence was estimated to be as high as 23%.
Please join me after the jump for some more personal reflections on the topic.
Unfortunately for me, I have already had some direct personal experience with PTSD in the wake of having been sexually abused as an adolescent. So the idea that PTSD would be a possibility in the process of dealing with cancer was not entirely foreign. On the other hand, at least some of the techniques that I used to manage and reduce my PTSD-related reactions are still useful, and have probably helped prevent my development of the full-blown condition again. I’ve learned others more recently.
The most disruptive symptom I had of PTSD related to my cancer diagnosis has been sleeplessness. It has been subtle but persistent; for quite some time I attributed it to my nightsweats. But more recently, as the latter symptom subsides, the sleep disturbances have become more noticeable.
My most common symptom, apart from that, would be a hypersensitivity to any little ache and pain in my body. We’ve had some discussion of “cancerhead” here already—that sense that anything that goes wrong (even if you know you twisted your knee when you tripped down the steps) is automatically related to a recurrence or spread of cancer. I’m usually able to be reasonable and talk myself out of such a morbid reaction, but sometimes it’s more difficult than others to do so.
From my cursory review of the approximately 180 abstracts I located in PubMed by searching for “cancer” and “PTSD” in the title or abstract, there is not much research being done, yet, in assessing the clinical significance, if any, of PTSD among the populations of people with and/or affected by cancer. There are some related to quality of life, and some related to long-term survival prospects, but not as many as one might think.
I do not think I am overstating the case when I suggest that PTSD symptoms may be much more common, even if they are not part of a full-blown condition, than most people acknowledge. Nor do I think I am exaggerating the potential of PTSD to interfere with one's ability to pursue recovery. It takes a lot of effort to care for oneself during a medical crisis, regardless of the extent of support one can get from loved ones. Along with the physical challenges presented by cancer, which can be significant, permanent, and life-altering, the logistical challenges of negotiating the system of health care (and potentially more than one, and not necessarily compatible ones, either) are also daunting. I can well imagine that someone dealing with PTSD to a significant degree could lose ground that might be impossible to regain.
My own coping skills have not generally been pharmaceutical ones, though there was a stretch of time when I was a regular consumer of Ativan. I found meditation and visualization, restorative yoga, breathing, aromatherapy, walks in the woods, and singing all to be very calming and therapeutic. The interruption of obsessive thinking, or rumination, is key for me to maintain my psychological and emotional equilibrium. Some would include vigorous physical activity on that list. I probably would, too, if I engaged in it more often!
[In addition, the support I received from early on (beginning less than two months after my surgery) from the local Cancer Support Community was invaluable, and I should never post a diary about my recovery without including them for special thanks. Annan reminded me inadvertently of my oversight. I have taken part in a weekly support group for over two years, and also regular yoga and meditation sessions they offer—all for free.]
My questions to you tonight are these: Do you think there is merit in considering PTSD as a relevant factor in holistic treatments of cancer? If so, what sorts of studies would you propose, including the populations you think would benefit from them most?
It’s fine as well if you are willing to disclose experiences that you might have had with PTSD and cancer, but I realize that for some it is too personal a matter to discuss here.
**[Note: Copy inside the [ ], in two places above, was added 7/9/13 in the wake of reading diary comments. Thanks to post rational and annan in particular for their input.]
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.