“I’m having a terrible panic attack, and I don’t know why,” I might say.
“Isn’t it almost the anniversary of your cancer diagnosis?” an observant friend might ask.
To varying degrees, cancer survivors may experience psychological distress long after treatment is over, especially when something triggers stressful memories. The symptoms range from anxiety over a routine scan, to disabling panic attacks, to nightmares and flashbacks about incidents that happened during treatment. People in the cancer community have known this, but we haven’t always had a name to describe what is happening to us. Now we know that these problems can be post-traumatic stress disorder (PTSD).
According to the National Institute of Mental Health, “PTSD is a disorder that develops in some people who have experienced a shocking, scary, or dangerous event. It is natural to feel afraid during and after a traumatic situation.” Most people recover after the frightening experience. However, when people still have nightmares, panic attacks, or other problems long after the danger has passed, they may have PTSD.
A study published in Cancer in November 2017 found that about 20 percent of the 429 South Asian patients studied had PTSD at a follow-up visit six months after treatment. Of those, about one-third were still having problems four years later. Caryn Mei Hsien Chan, Ph.D., of the National University of Malaysia and her fellow researchers concluded that psychological screening and follow-up care are important for cancer patients and survivors.
The study, which used standard psychological tests to measure emotional distress in the patients, is one of the first to apply rigorous standards to assess PTSD in cancer patients and to follow them over a period of years. More research is needed to see if their findings apply to a wider base of patients.
Living with medical PTSD
Not every nightmare or flashback is PTSD. To be classified as PTSD, problems need to be persistent and interfere with a person’s life. For example, anxiety about a doctor’s visit severe enough to cause a patient to cancel it, especially if the avoidance happens more than once, is entering the realm of PTSD.
If flashbacks, nightmares, or panic attacks are making your cancer treatment and recovery difficult, you don’t need to suffer in silence or try to tough it out. For example, cancer survivor Brenda Denzler found that medical PTSD from a childhood life-threatening illness made it hard for her to trust doctors and move forward with the medical treatment she needed for inflammatory breast cancer. Now, years after her successful cancer treatment, certain situations still trigger her PTSD.
In an email interview with HealthCentral, Denzler offered five suggestions for living more successfully with PTSD:
1. Realize you have the condition. Understanding why you are having problems is crucial to getting help.
2. Understand your triggers. When you know what is likely to precipitate symptoms, “you can walk into threatening situations prepared to manage the reactions they are likely to cause,” says Denzler.
3. Develop a set of tools. Denzler suggests “counseling with a knowledgeable and sympathetic mental health professional.” She also recommends exploring medications with your doctor. “If you can find a support group who shares either a PTSD diagnosis in general or, more specifically, a medical PTSD diagnosis, having a community of people who really ‘get it’ could be comforting,” she says.
4. Create a hand-out. Explaining your PTSD to a new medical provider can be difficult, so try writing down the information before your appointment. Denzler recommends “a very short list of pointers on how to work with you to minimize the chance of triggering you, or most effectively help you through triggering situations that are unavoidable in providing care to you.” In addition, have your new doctor communicate with your counselor about your situation.
5. “Always remember that you are not alone, and it is not your fault!” Denzler says, “We can feel like bad children for having these feelings and not being able to ignore or control them — even if we are well into our senior citizen years. It’s hard to remember, sometimes, when the effects of your PTSD irritate or become a problem to those around you, but…. It is not your fault! Do your best to understand and manage your condition, and ignore the guilt for not being perfect at doing so.”
If the findings in the Malaysian study hold true, most people will not have disabling emotional distress after a cancer diagnosis, but one in five is a significant minority whose lives are affected by PTSD. Time may not be the cure for PTSD. If you or someone you love is still struggling, ask for help.
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Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.