Coping with Fear of Recurrence: Part 1
As the field of oncology advances, increasing numbers of cancer patients are living longer with the aftermath of cancer treatment
As the field of oncology advances, increasing numbers of cancer patients are living longer with the aftermath of cancer treatment. Survivors may experience psychological consequences as a result of their cancer experience, and few psychological symptoms are as ubiquitous among cancer survivors as Fear of Recurrence (FOR), defined as the fear of a disease recurring or progressing. And for good reason: for many survivors their fear is realistic. Yet high levels of FOR can impair survivorsâ€™ quality of life. It may be difficult to figure out how to work with survivors to help them put their FOR of in perspective so they can enjoy their lives going forward.This will be a two-part blog, with this portion covering topics such as prevalence and consequences of FOR. The next blog will focus on strategies to manage FOR.
HOW MANY SURVIVORS HAVE FEAR OF RECURRENCE (FOR) , AND HOW LONG DOES IT LAST?
Some level of FOR is reported by almost all cancer survivors, with estimates of prevalence as high as 97%1. Although one may assume that FOR would decrease over time as risk of recurrence decreases (for most types of cancer) over time, levels of FOR among survivors have been shown to remain steady over time. For example, approximately 26% of long-time (over 5 years) breast cancer survivors report moderate to high levels of FOR2.
WHO IS AT HIGHEST RISK FOR HIGH LEVELS OF FOR?
From the perspective of a healthcare provider, it would seem logical that those most at risk for high levels of FOR would be survivors whose risk of recurrence was higher due to clinical factors, such as having a cancer that was particularly aggressive or was diagnosed at a later stage. But studies have demonstrated that the rather than objective clinical assessment of the risk of recurrence, the survivorâ€™s subjective experience of cancer treatment1, in addition to psychological factors and sociodemographic variables, combine to impact their perception of their risk of recurrence.
Higher levels of FOR are associated these factors:
- Age: for women, being younger, especially those with young children3
- Education: having a lower level of education4
- Location: living in a rural area5
- Having poorer levels of overall health6
- Experiencing physical symptoms considered to be after-effects of cancer treatment, including pain and fatigue6-7
- Perceiving they donâ€™t have strong enough coping skills to deal with the threat of recurrence8
- Having high levels of anxiety and believing that anxiety is both helpful and uncontrollable9
- Being depressed10 or having an anxiety disorder11
- Identifying as a â€œtumor patientâ€10
WHY DOESNâ€™T FOR DECREASE OVER TIME? AND WHY ARENâ€™T LEVELS OF FOR CORRELATED WITH DISEASE SEVERITY?
It does seem odd that FOR doesnâ€™t decrease over time, and that levels arenâ€™t associated with severity of disease. Healthcare practitioners may conceptualize risk of recurrence in objective terms of specific type of disease, grade, stage, and effectiveness of treatment. But for the general population of cancer survivors who do not have a medical background, FOR may be based more on the subjective experience of cancer treatment and the factors mentioned above than on medical facts. In fact, studies have documented that often survivors do not have an accurate understanding of their risk for recurrence5. Â Also, as time passes the accuracy of perception of risk for recurrence decreases, and higher levels of anxiety are associated with an overestimation of risk of recurrence12.
- Koch L, Jansen L, Brenner H, et al. Fear of recurrence and disease progression in long-term (â‰¥5 years) cancer survivorsâ€”a systematic review of quantitative studies. Psychooncology. 2013;1:1-11.
- Mehnert A, Berg P, Henrich G, et al. Fear of cancer progression and cancer-related instrusive cognitions in breast cancer survivors.Â Psychooncology. 2009:18(12):1273-1280.
- Ares I, Lebel S, Bielajew C. The impact of motherhood on perceived stress, illness intrusiveness and fear of cancer recurrence in young breast cancer survivors over time. Psychol Health. 2014;29(6):651-670.
- Bowman KF, Rose JK, Deimling GT et al. Primary care physiciansâ€™ involvement in the cancer care of older long-term survivors. J Aging Health. 2010;22(5):673-686.
- Kelly KM, Ajmera M, Bhattacharjee S, et al. Perception of cancer recurrence risk:Â more information is better. Patient Educ Â Couns. 2013;3:361-366.
- Crespi CM, Ganz PA, Petersen L, et al. Refinement and psychometric evaluation of the impact of cancer scale.Â J Natl Cancer Inst. 2008;100(21):1530-1541.
- van den Beuken-van Everdingen MHJ, Peters ML, de Rijke JM, et al. Concerns of former breast cancer patients about disease recurrence:Â a validation and prevalence study. Psychooncology. 2008;17:1137-1145.
- Lee-Jones C, Humphris G, Dixon R, et al. Fear of cancer recurrenceâ€”a literature review and proposed cognitive formulation to explain exacerbation of recurrence fears.Â Psychooncology. 1997;6(2):95-105.
- Butow P, Kelly S, Thewes B, et al. Attentional bias and metacognitions in cancer survivors with high fear of cancer recurrence. Psychooncology. 2014 A 25. doi:Â 10.1002/pon.3659. [Epub ahead of print].
- Koch L, Bertram H, Eberle A, et al. Fear of recurrence in long-term breast cancer survivorsâ€”still an issue.Â Results on prevalence, determinants, and the association with quality of life and depression from the Cancer Survivorshipâ€”a multi-regional population-based study. Psychooncology. 2014;23:547-554.
- Simard S, Savard J. Screening and comorbidity of clinical levels of fear of cancer recurrence. J Cancer Surviv. 2015. doi: 10.1007/s11764-015-0424-4. [Epub ahead of print].
- Liu Y, Perez M, Aft RL, et al. Accuracy of perceived risk of recurrence among patients with early-stage breast cancer.Â Cancer Epidemiol Biomarkers Prev. 2010;19:675-680.