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. 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 survivors’ 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 survivor’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:

Sociodemographic factors:

• Age: for women, being younger, especially those with young children³
• Education: having a lower level of education⁴
• Location: living in a rural area⁵

Physical factors:

• Having poorer levels of overall health⁶
• Experiencing physical symptoms considered to be after-effects of cancer treatment, including pain and fatigue^6-7

Psychological factors: 

• Perceiving they don’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 “tumor patient”¹⁰

WHY DOESN’T FOR DECREASE OVER TIME? AND WHY AREN’T LEVELS OF FOR CORRELATED WITH DISEASE SEVERITY?

It does seem odd that FOR doesn’t decrease over time, and that levels aren’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.  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.

References

• Koch L, Jansen L, Brenner H, et al. Fear of recurrence and disease progression in long-term (≥5 years) cancer survivors—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.  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 physicians’ 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:  more information is better. Patient Educ  Couns. 2013;3:361-366.
• Crespi CM, Ganz PA, Petersen L, et al. Refinement and psychometric evaluation of the impact of cancer scale.  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:  a validation and prevalence study. Psychooncology. 2008;17:1137-1145.
• Lee-Jones C, Humphris G, Dixon R, et al. Fear of cancer recurrence—a literature review and proposed cognitive formulation to explain exacerbation of recurrence fears.  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:  10.1002/pon.3659. [Epub ahead of print].
• Koch L, Bertram H, Eberle A, et al. Fear of recurrence in long-term breast cancer survivors—still an issue.  Results on prevalence, determinants, and the association with quality of life and depression from the Cancer Survivorship—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.  Cancer Epidemiol Biomarkers Prev. 2010;19:675-680.