WHAT ARE THE CONSEQUENCES OF FOR?
High levels of FOR can severely impact a survivor’s quality of life. A review by Koch et al.1 documented that moderate to high levels of FOR may result in lower all quality of life, decreased psychological well-being (due to increases in depression and anxiety), and a decreased ability to carry out the tasks of daily life. High levels of FOR are also associated with a decrease in overall health (due in part to lower adherence to follow-up recommendations, both for cancer-related and general health concerns2) and an increase in health care costs2. As a side note, a recent study found that 49% of cancer patients died from causes other than cancer3, indicating a need to emphasize the need to follow general health recommendations in addition to focusing on cancer progression and recurrence.
WHAT ARE COMMON TRIGGERS FOR FEAR OF RECURRENCE?4
- Routine follow-up visits and tests
- Anniversary dates (of diagnosis, end of cancer treatment, birthday)
- Worrisome or “suspicious” symptoms
- Persistent treatment-related side effects (especially fatigue or pain)
- Change in health (weight loss, fatigue)
- Illness in a family member
- Death of a fellow survivor/prominent cancer survivor
- Times of stress
- Idiosyncratic triggers (the smell of alcohol, sight of the treatment center)
It is rare to meet a cancer survivor who has no thoughts of recurrence. But in fact, some level of FOR can be beneficial, because a low level of anxiety about health can motivate people to follow recommendations regarding follow-up care, such as screenings, medications, diet, exercise, and smoking cessation.1 But survivors who have a diminished quality of life due to high levels of FOR may need help. Survivors’ oncology teams can play a crucial role in helping survivors manage their FOR. Below is a list which can be provided to survivors:
STEPS TO MANAGE FEAR OF RECURRENCE:
- Get an accurate understanding of your risk of recurrence from your oncology team.
- Have a plan: Learn the signs of recurrence, and learn what to do if you have symptoms.
- Ask your oncology team what you can do to decrease your risk of recurrence, including diet, exercise, supplements (probably not recommended), and smoking cessation.
- Focus on wellness: Work towards health (diet and exercise, etc.) When setting goals, start low and go slow. Take small steps and be patient with yourself! Get support from friends and family.
- Follow recommendations for general health concerns as well.
- Do something enjoyable daily.
- Be social.
- Learn to live with uncertainty.
- Think about what gives your life meaning, what your values are, and work towards those values.
Know when to get help:
- Anytime you are thinking of harming yourself or others.
- If these suggestions are not helpful, and you are not improving.
- When anxiety or sadness over FOR is harming your quality of life. Low to moderate FOR around the time of triggers is expected, but sustained moderate to high FOR is harmful to your quality of life.
- Getting help: Ask your healthcare team for a referral. Seek counselors who are covered by your insurance.
Helpful online resources:
- On Cancer: Six Tips for Managing Fear of Cancer Recurrence (Memorial Sloan Kettering website, Esther Napolitano, BS) http://www.mskcc.org/blog/six-tips-managing-fear-recurrence
- Managing Uncertainty/Fear of Recurrence (Memorial Sloan Kettering website) http://www.mskcc.org/cancer-care/survivorship/managing-uncertainty-fear-recurrence
Oncology healthcare providers have been lax in referring survivors with high levels of FOR to psychosocial professionals, with only 21% of clinical providers reporting that they routinely refer survivors with high levels of FOR to treatment2. Although perhaps not widespread, interventions targeting FOR have been shown to be effective5-6. Early studies have demonstrated that cognitive behavioral therapy, supportive-experiential group therapy, and cognitive existential approaches have effective in reducing FOR, as well as improving quality of life and decreasing overall distress5-6. Patients with advanced or recurrent disease benefitted the most from the intervention5. Regardless of whether your center has a formal FOR intervention available, survivors with significant levels of FOR should be referred for psychosocial services. The goal for treatment should not be the elimination of FOR, which may not be rational or feasible, but to put FOR into a reasonable perspective within the survivor’s life, propelling the survivor to work towards overall wellness, both emotional and physical.
- 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.
- Thewes B, Brebach R, Dzidowska M, et al. Current approaches to managing fear of cancer recurrence: a descriptive survey of psychosocial and clinical health professionals. Psychooncology. 2014;23:390-396.
- Rowland JH, Massie MJ. Breast Cancer, in Holland JC (ed): Psycho-Oncology. New York, NY, Oxford University Press, 2010, p 179.
- Herschbach P, Book K, Dinkel A, et al. Evaluation of two group therapies to reduce fear of progression in cancer patients. Support Care Cancer. 2010;18:471-479.
- Lebel S, Maheu C, Lefebvre M et al. Addressing fear of cancer recurrence among women with cancer: a feasibility and preliminary outcome study. J Cancer Surviv. 2014;8:485-496.