Do Cancer Patients and Survivors Experience PTSD?
Hester Hill Schnipper, LICSW, OSW-C Program Manager Emeritus, Oncology, Social Work
JANUARY 11, 2022
We are all familiar with the concept of Post Traumatic Stress Syndrome (PTSD). Of course, human beings have been exposed to trauma since the beginning of time. If you walk through a museum, you will see and read of terrible things that people have endured. Whether we are thinking about wild animal attacks, war, or terrorists, our reactions and feelings are the same: flashbacks, nightmares, physical symptoms, and obsessive thinking about the event. In 1980, the American Psychiatric Association added PTSD to the third edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-III).
The who am I now? question can haunt us. Will I ever have the old me back?
Although it was controversial when first listed, the diagnosis was immediately recognized as filling an important gap and best describing the experience of survivors of trauma. After World War I, soldiers were called shell-shocked. Eventually after Vietnam, they were diagnosed as having PTSD. The core difference between PTSD and almost every other diagnosis in the DSM is the understanding that the etiology of the condition is due to an external exposure or event, not to an individual condition or reaction.
For a long time, I have felt that PTSD was a more accurate description of many cancer patients and survivors’ experiences than depression or anxiety. Of course, many of us are sad and scared, and some of us do have clinical depression or anxiety that can and should be treated. It has been a godsend that there are effective medications to help manage those very big feelings. It is just as true, however, that even more people who are going through or who have been through cancer treatment are contending with PTSD.
Often these moments occur once active treatment has ended. It may only be then that we have the real and psychological time and space to consider what has happened to us. Then come the thoughts: What happened to me? I can’t believe I had cancer. I can’t believe that I have been through surgery and radiation and lost my hair to chemotherapy. Who am I now?
Our reactions often match the list of PTSD symptoms: reexperiencing the events, emotional numbing, avoidance of people and places who remind us of the trauma, and feeling on edge or hyper-vigilant to our surroundings and our bodies. We may be easily angered, have trouble focusing and sleeping, and behave differently with our families and friends. The who am I now? question can haunt us. Will I ever have the old me back?
It is often difficult to return to the hospital for medical appointments, and many people cannot enter the infusion area without experiencing a wave of nausea. One of the chemo nurses once told me that she ran into a patient in the produce section at Whole Foods; the patient took one look at her and vomited all over the oranges. That story has always made me, and anyone to whom I told it, both shudder and smile—and completely understand.
It turns out that there is a newish formulation that is perhaps even more relevant for cancer patients and survivors: continuous traumatic stress (CTS). CTS differentiates itself from PTSD by the timing of the trauma, and the replacement of post with continuous. It was originally conceptualized by a group of anti-apartheid mental health activists in South Africa who noted that many of their clients continued to live under traumatic conditions. Their experience, like that of cancer patients, was not exposure to a single trauma, but living for long periods with some degree of trauma and high stress. In South Africa many people faced a real possibility of future trouble; cancer patients and survivors face a real possibility of future trouble. It does seem important to note that I am certainly not suggesting that going through a course of chemotherapy is equivalent to living under oppression forever. We legitimately worry about recurrence and more illness, but we are thankfully not worried about wrongful imprisonment and torture.
Since first learning of CTS, I have talked with several of my patients about it, asking for their thoughts about applying it to our situation. Some felt it was more accurate than PTSD. The feelings or symptoms are the same, but cancer is not a one-shot problem. Some people feel retraumatized each time they return to the hospital and all of us can too easily imagine our worries should we again face cancer treatment. People who are already living with a recurrence or advanced cancer especially contend with ongoing, often daily, trauma.