I belong to a club that no one wants to join—the “Breast Cancer Club.” I was diagnosed with breast cancer in 2006 and have been cancer free since 2007. I found that once I was in this club, I wanted nothing more than to help others in it survive and thrive. So, I made it my job. Literally. I have been on staff with IU Health for 24 years and I have been an oncology social worker for 10 of those. I love my job! I am fortunate enough to be able to provide resources, support and programs for women (and their families and caregivers) who are newly diagnosed with breast cancer, and follow them throughout their journey.

During this time, I have met thousands of women coping with breast cancer. We span generations, represent diverse cultural backgrounds, face different stages of cancer and attempt various treatments. Aside from our cancer diagnoses, most all of us share something else in common—fear of cancer recurrence (FCR). A new ache, a sore throat or an abnormal lab test result can trigger the terrifying thought—my cancer is back.

Surviving cancer comes with regular surveillance. Many survivors manage their FCR effectively…until it is time for the next exam, mammogram or MRI. Studies show that at least 34 percent of survivors report a clinically significant level of fear (Custers, J., vandenBerg, S., van Laarhoven, H., Bleiker, E., Gielissen, M., & Prins, J., 2014; Simard, S., Thewes, B., Humphris, G., Dixon, M., Hayden, C., Mireskandari, S., & Ozakinci, G., 2013; Koch, Jansen, Brenner & Arndt, 2013) even after successful treatment with curative intent. With more than 15.5 million cancer survivors alive in the United States today, and projections of more than 20 million survivors by 2026 (American Cancer Society, 2016), the number of cancer survivors struggling with FCR is notable.

FCR is one of the most disruptive aspects of survivorship, often associated with reduced quality of life and emotional wellbeing, greater mental and physical fatigue, and increased psychological and spiritual distress (Custers et al., 2014; Simard et al., 2013; Koch, et al., 2013). FCR is also the most frequently identified unmet supportive care need reported by cancer  survivors (Armes, J., Crowe, M., Colbourne, L., Morgan, H., Murrells, T., Oakley, C., … & Richardson, A., 2009). In fact, in a study by Spencer and colleagues (Spencer, S., Lehman, J., Wynings, C., Arena, P., Carver, C., Antoni, M., … & Love, N., 1999), cancer survivors reported more concern about FCR than financial worries, not seeing their children grow up and harm from adjuvant therapies. And the most puzzling part of this finding is that many cancer survivors are not verbalizing this fear, nor bringing it up with their family, friends or healthcare providers.

Dr. Shelley Johns, a researcher and clinician with the Indiana University School of Medicine, recently conducted a randomized clinical trial testing behavioral interventions for breast cancer survivors struggling with clinically significant FCR (Johns, S., Cohee, A., Beck-Coon, K., Brown, L., LaPradd, M., & Monahan, P., (2017). Survivors who enrolled were randomly assigned to one of three treatment approaches: a 6-week Acceptance and Commitment Therapy (ACT) group, a 6-week survivorship education (SE) group or enhanced usual care (EUC) with provided readings on survivorship. Participants enrolled in the behavioral intervention groups (i.e., ACT, SE) were highly satisfied with the interventions received, significantly more so than participants randomized to EUC. The ACT and SE groups also reported what they learned as quite helpful for managing and coping with their FCR.

I was honored to serve as an interventionist in this trial. I facilitated the survivorship education class at the IU Health North Breast Care Center where I work. I was also fortunate enough to present a poster of this study at the AOSW conference in Denver. The two most impressive findings of this study for me relate to recruitment and retention. More than 90 breast cancer survivors were enrolled in the trial in 10 weeks—a remarkable feat in the world of research. Moreover, 94 percent of the enrolled breast cancer survivors remained actively involved in the trial for its 8-month duration, another impressive accomplishment. I saw firsthand dozens of busy women making time to participate in this study, longing for ways to help calm their fears. These findings illustrate that cancer survivors want to learn how to manage their FCR, and are drawn to practical strategies they can use for the rest of their lives.

In 2014, Cancer Australia published clinical guidelines and recommendations that encourage clinicians to address their patients’ FCR. This provides an incredible opportunity for social work intervention. As an oncology social worker, I believe information regarding FCR should be given to all survivors after their primary treatment. Often social workers will review distress screening with patients at different points of their care. This could be an easy reminder to also inquire about any FCR. Routine assessments of FCR should be included as part of survivorship care and reducing FCR ought to be a goal of every clinician. Information regarding FCR should be part of patients’ survivor care plan, and clinicians should readily initiate conversations regarding these fears and how to manage them adaptively. Patients identified as having clinically significant FCR should be referred to appropriate healthcare professionals who can deliver evidence-based interventions.

I believe it is paramount to address FCR within the standard care we provide our patients. To do this, we must continue to participate in and support research aimed at this prevalent, disruptive and often overlooked source of distress.

References

American Cancer Society. (2016). Cancer treatment & survivorship facts & figures 2016-2017. Atlanta: Author.

Armes, J., Crowe, M., Colbourne, L., Morgan, H., Murrells, T., Oakley, C., Palmer, N., Ream, E., Young, A., & Richardson, A. (2009). Patient’s supportive care needs beyond the end of cancer treatment: A prospective longitudinal survey. Journal of Clinical Oncology, 36, 6172-6179. doi: 10.1200/JCO.2009.22.5151.

Custers, J.A., van den Berg, S.W., van Laarhoven, H.W., Bleiker, E.M., Gielissen, M,F., & Prins, J.B. (2014). The cancer worry scale: Detecting fear of recurrence in breast cancer survivors. Cancer Nursing, 37(1): E44-50. doi: 10.1097/ncc.0b013e3182813a17

Johns, S., Cohee, A., Beck-Coon, K., Brown, L., LaPradd, M., & Monahan, P. (2017, March 30). Acceptance and commitment therapy for cancer survivors with fear of recurrence: Results of a 3-arm randomized controlled pilot. Paper presented at the 2017 Society of Behavioral Medicine Annual Meeting, San Diego, CA.

Koch, L., Jansen, L., Brenner, H., & Arndt, V. (2013). Fear of recurrence and disease progression in long-term (>/= 5 years) cancer survivors—a systematic review of quantitative studies. Psycho-Oncology, 22, 1-11.

Miller, K.D., Siegel, R.L., Lin, C.C., Mariotto, A.B., Kramer, J.L., Rowland, J.H., Stein, K.D., Alteri, R., & Jemel, A. (2016). Cancer treatment and survivorship statistics, 2016. CA: A Cancer Journal for Clinicians, 66, 271-289.

Cancer Australia. (2014). Recommendations for the identification and management of fear of cancer recurrence in adult cancer survivors. 2014. Surrey Hills NSW, Australia: Author.

Simard, S., Thewes, B., Humphris, G., Dixon, M., Hayden, C., Mireskandari, S., & Ozakinci, G. (2013). Fear of cancer recurrence in adult cancer survivors: A systematic review of quantitative studies. Journal of Cancer Survivorship: Research and Practice, 7, 300-322.

Simard, S., Savard, J., & Ivers, H. (2010). Fear of cancer recurrence: Specific profiles and nature of intrusive thoughts. Journal of Cancer Survivorship: Research and Practice, 4, 361-371.

Spencer, S.M., Lehman, J.M., Wynings, C., Arena, P., Carver, C., Antoni, M. Derhagopian, R., Ironson, G., & Love, N. (1999). Concerns about breast cancer and relations to psychosocial well-being in a multiethnic sample of early-stage patients. Health Psychology, 18, 159-168.