One of the more seldom seen but important late side effects of cancer and its treatments is the development of severe distress. This is very similar to post-traumatic stress disorder and is called past-traumatic stress syndrome (PTSS). It is thought that this occurs in cancer survivors as a result of repeated stress over time such as experiencing repeated, painful procedures. Witnessing the suffering and experiencing the loss of other people from support groups and/or treatment centres are also potential contributors. Post-traumatic stress may lead to problems with return to work or school; decision making capacity may be affected and some people struggle to process information. Survivors may avoid follow up appointments because the anxiety before and during the interaction with health care providers makes their stress symptoms worse. Many survivors with PTSS think that they are going crazy and do not report their distress to anyone; this precludes getting help and ongoing stress can make them physically ill.
What are the signs of post-traumatic stress?
- Reliving the trauma of diagnosis and/or treatment through intrusive thoughts and/or memories
- Emotional numbing and avoidance of anything reminding the survivor of treatment
- Being hyper-vigilant and in a constant state of arousal with rapid heart rate and breathing
Treatment of PTSS is based on experience with combat veterans, survivors of disasters and sexual assault; we have no evidence for this in cancer survivors yet. Anti-depressants may be effective and there appears to be a role for cognitive based behavioural therapy. One of the more challenging issues is that survivors of sexual assault and disasters usually are not exposed to repeated trauma in the same way as cancer survivors who have to return to the scene of their trauma (the cancer center or hospital) repeatedly over years and may have to endure the same procedures over and over.
Strategies to reduce anxiety and distress include actively trying to change negative thinking. This can be challenging however those with an optimistic outlook tend to be less anxious and/or depressed; it helps if the partner also shares this optimism (Gustavsson-Lilius, Julkunen, Keskivaara, Lipsanen, & Hietanen, 2012). It is important to note that this is NOT the same as positive thinking. Optimism is usually a personality trait however one can learn to be more optimistic, primarily through learning to control negative thinking and consciously reframing negative thoughts.
Cognitive behavioral therapy and supportive counseling are non-pharmaceutical interventions that have been shown to be effective however some people may need anti-depressants and/or anti-anxiety medication. Relaxation exercises in the form of yoga, guided imagery, deep breathing and progressive muscle relaxation can also help.
Everyone copes in their own way
There are different coping styles with some being more effective than others. Proactive coping tends to be the most effective and for some, seeking support can be effective while for others this may be associated with greater distress. Negative coping styles include distancing and negative expression (Trevino et al., 2012). Denial and self-blame are ineffective coping styles and may lead to further problems.
The other side of the coin: post-traumatic growth
Post-traumatic growth is a potential positive side effect of cancer and is seen through finding purpose and meaning in life, experiencing an enriched spiritual life and faith, as well as having a greater appreciation for life itself and the people close to one. Those who experience this phenomenon report that they have a greater sense of purpose and a stronger sense of self, recognize that they are more mature as a result of the cancer experience, feel greater empathy for others and have better interpersonal relationships. While cancer no doubt increases awareness of personal vulnerability, it can also lead to a greater sense of self-reliance. Cognitive behavioral therapy and supportive counseling can both help the cancer survivor reframe their experience as one of growth and positive outcomes. Others are fortunate in being able to find meaning and growth through self-reflection and awareness.
Gustavsson-Lilius, M., Julkunen, J., Keskivaara, P., Lipsanen, J., & Hietanen, P. (2012). Predictors of distress in cancer patients and their partners: The role of optimism in the sense of coherence construct. Psychology & Health, 27(2), 178-195.
Trevino, K. M., Maciejewski, P. K., Fasciano, K., Greer, J., Partridge, A., Kacel, E. L., et al. (2012). Coping and psychological distress in young adults with advanced cancer. The Journal of Supportive Oncology, 10(3), 124-130.
Dr Anne Katz is a clinical nurse specialist and AASECT-certified sexuality counsellor at CancerCare Manitoba. She has written 2 books on the topic of cancer survivorship (After You Ring the Bell: Ten Challenges for the Cancer Survivor [Hygeia Media] and Surviving after Cancer: Living the New Normal [Rowman & Littlefield]) and 3 on cancer and sexuality. Dr. Katz’ professional life is focused on providing information, education and counselling to people with cancer and their partners about sexual changes that can occur during and after treatment. But there is another important aspect to this work; Dr. Katz wants every cancer patient to be able to have a discussion about sexuality with their health care providers. And so she travels across North America (as well as Europe and the Caribbean!) teaching health care providers to ask their patients about this important part of quality of life.
If you’d like to know more about Dr. Katz and the work she does, or if you’d like her to come to your city or town, health care facility or doctor’s office, you can contact her by email.
“I am always eager to spread the word and break the silence.”