"Could I have PTSD?"

This is a question I often get as a psychologist specializing in cancer. Most people I speak with feel like their diagnosis and treatment were traumatic, but they're not sure if it is “traumatic enough” to warrant a diagnosis of post-traumatic stress disorder (PTSD). There's often a misunderstanding that only combat veterans or first responders can be diagnosed with PTSD. Or, sadly, people with cancer hear the message that they have to “stay positive,” “be strong,” and “fight” their disease and think that if they’re struggling, they must be failing or weak.

But here's the reality–it is way more common to struggle during cancer than not. Researchers have found that around 50 percent¹ of people with cancer experience clinically significant–meaning life-impacting–distress. Figuring out how many of these distressed people have a diagnosis of PTSD is tricky–mostly because of changes in the Diagnostic and Statistical Manual of Mental Disorders (DSM), the book mental health providers use to diagnose psychiatric conditions. Earlier versions of the DSM defined a life-threatening illness as a traumatic event. The most current version, however, notes that medical incidents aren't necessarily traumatic events, and specifies that the illness has to be sudden and catastrophic, like anaphylactic shock, to meet the criteria for PTSD.² These changes have made it challenging for researchers to accurately estimate the number of people with cancer who meet the criteria for PTSD. Because of this change, estimates range from 5 percent of people with cancer–about the same percentage as those without cancer–to as high as 55 percent.³

Although cancer treatment includes the risk of sudden and catastrophic events, the trauma associated with cancer may more often be experienced as chronic. Cancer can be uniquely traumatizing because of this repeated exposure to unpredictable and uncontrollable stressors over a longer period. These stressors are rarely just physical and tend to impact many other areas of one’s life–emotional, relational, spiritual, and financial, to highlight a few. This, in addition to the fact that the threat itself comes from one’s own body, adds to this uniquely traumatizing experience. The stressors also don't resolve when treatment ends. For those that move beyond active treatment, the experience of follow-up care, like scans and bloodwork, can be a trigger for symptoms of PTSD. For those who have metastatic disease, triggers are ongoing.

More recently, cancer researchers have focused on “posttraumatic stress symptoms” rather than using the DSM criteria for diagnosing PTSD. This is a more flexible and possibly more accurate way to understand how trauma impacts someone with cancer rather than an “all or nothing” (either you have PTSD or you don’t) way of thinking about it.

Symptoms of posttraumatic stress related to cancer include:⁴

• Involuntary, distressing thoughts about cancer. Intrusive thoughts, nightmares, or flashbacks or events related to cancer.
• Physical symptoms. Those with flashbacks or intrusive thoughts may notice that their bodies react like they are in danger–shortness of breath, heart palpitations, and feeling sweaty or shaky. Sometimes these symptoms are more general and not attached to any particular thought or memory, like trouble sleeping or being more prone to feeling tense or easily startled.
• Avoidance. Some people may avoid triggers that remind them of cancer to prevent them from re-experiencing the trauma. This could even be as serious as skipping treatments or canceling follow-up appointments.
• Intense emotions. Experiencing challenging emotions such as anxiety, irritability, hypervigilance, or emotional numbness.

These symptoms can really affect your quality of life; you don’t need to have experienced all of them for them to be impactful. If you are experiencing some of these symptoms and they aren't getting better, it may be time to reach out for help. Remember, you are not alone, and it is normal to struggle when navigating the uniquely traumatizing cancer experience.