Fear of recurrence, or fear of cancer coming back, is a common psychological effect among people diagnosed with cancer, during or after treatment. A review of several existing studies now shows that fear of recurrence may last more than 5 years beyond the date of diagnosis, and be felt at nearly the same level of intensity as during the first 5 years.
As cancer treatments advance, more people live longer after diagnosis. Because of this, researchers are interested in understanding more about the long-term emotional effects of cancer diagnosis and treatment. Fear of recurrence has been assessed in many studies, but often in the short-term. The investigators of this study explored it in the long-term (5 or more years after diagnosis) to better understand its impact.
The researchers identified 15 studies that included data on long-term fear of recurrence. Of those, eight were studies of people with breast cancer only; the other seven included people with breast cancer or other types of cancer. Eleven of the studies had 200 or more participants, with the largest study including 1,366 people with cancer.
In 15 studies, participants reported experiencing fear of recurrence by mailed survey, by phone, or by in-person interview, which varied among the studies.
For each of the studies, data was collected on different factors. In instances in which the original study investigators collected information on the same factors, the current researchers combined data, from which they drew their conclusions. Factors recorded include:
- demographic factors (a person’s age, marital status, education, etc.),
- medical factors related to cancer (type, years since treatment, treatment type, etc.),
- medical factors related to other diseases or symptoms (general health, medicines, use of antidepressants, etc.),
- functioning (daily living activities, difficulty with movement or memory),
- psychosocial factors (optimism, social support, uncertainty, etc.),
- lifestyle factors (physical activity, smoking, alcohol use, etc.)
- patient provider factors (communication with providers, personal involvement in care, etc.).
Overall, the authors of the study found that the majority of people with cancer continued to experience fear of recurrence 5 or more years after diagnosis. However, most people with long-term fear of recurrence reported only low to moderate degrees of worry, the same level of worry reported in the short-term.
Some of the key findings of this review follow:
- Fear of recurrence is associated with poorer quality of life and psychosocial well-being.
- Psychosocial factors were more greatly associated with fear of recurrence than medical or demographic factors. Specifically, negative psychosocial factors like family distress, negative life events and uncertainty about the future were associated with greater fear of recurrence. Positive psychosocial factors, like optimism, positive self-esteem and good social support were associated with lower levels of fear of recurrence.
- Results for specific demographic risk factors for fear of recurrence differed among studies but may include younger age, fewer years of formal education and Hispanic ethnicity.
- Fear of recurrence is seldom constant and maybe triggered by situations, like medical check-ups and anniversaries of diagnosis, media reminders of cancer or by unexplained symptoms.
What This Means for You
These findings suggest fear of recurrence is a frequent long-term consequence of cancer and cancer treatment with the potential to affect your overall quality-of-life if unaddressed. The causes of worry about cancer returning may be more closely related to personal issues (social support, emotional health and optimism) than to your medical background (cancer type and treatment received) or demographics (age and education). More research is needed to understand the roots of fear of recurrence and to design new ways to address it.
If you worry about recurrence, talk with your providers about ways to cope. You can also find more information and tips in our Guide to Understanding Fear of Recurrence, or call the Breast Cancer Helpline to talk to someone who understands how you are feeling.
Koch, L, Jansen, L, Brenner, H, Arndt, V. Fear of recurrence and disease progression in long-term (> 5 years) cancer survivors – a systematic review of quantitative studies. Psycho-Oncology. 2013; 22(1): 1-11