Coping with Fear of Cancer Recurrence

“We are all a little stronger than we think.” —Robin Roberts

“Harold,” 56, was diagnosed with colon cancer four years ago. Since finishing treatment, he has felt well and had no signs or symptoms to indicate his cancer has returned. None of his follow-up labs or scans have shown evidence of a recurrence. However, Harold is haunted every day by the thought that his cancer could come back. Sometimes at work he finds himself thinking about it, and again at night before he falls asleep. He wishes he could make the thoughts go away, but he has no idea how to do that.

Is all fear bad? No. Some degree of fear of recurrence (FOR) helps people take care of themselves and maintain their follow-up care. However, too much FOR has many negative consequences.

Moderate to high levels of FOR are related to less adaptive coping styles and to a belief that you are not skilled at solving your problems. Thus, it results in less problem-solving ability. People with high levels of FOR tend to be passive and feel hopeless or pessimistic. They may become isolated and reject help when it is offered. FOR correlates more with issues such as family distress, uncertainty about the future, and negative events than it does with issues related specifically to the cancer, such as time since diagnosis or type of cancer. FOR is associated with a poorer quality of life and sense of well-being. Optimism, good social support, and positive self-esteem are associated with lower levels of FOR.

For most people, FOR waxes and wanes. It may be triggered by a number of things, including doctor appointments, scans, anniversaries of dates of diagnosis, surgeries, end of active treatment, etc. You may find yourself feeling a sense of dread and not knowing why prior to these events. Often, the anticipation is worse than the day itself. Other things that can trigger FOR include things that involve your senses: seeing a TV show that has someone with cancer in it; the smell of rubbing alcohol; the sound of a phone alarm which used to remind you to take your meds; the taste of the foods that were the only things you could tolerate while on chemotherapy.

A FOR may also be triggered when someone else is diagnosed, has a recurrence, or dies. It is normal to have mixed feelings in these situations as well—sadness for the person it happened to, relief that it didn’t happen to you, and guilt for feeling relieved, for example. Whatever your feelings are, the important thing is that you don’t ignore them or try to talk yourself out of them. People think that ignoring or stuffing their feelings makes them go away. While that works temporarily, it is just that—temporary. What happens is that the feelings re-emerge bigger and more difficult to manage later and may not immediately be recognizable. They may present as a physical illness, depression, anxiety, or a vague sense that something is wrong. There are no wrong feelings—only wrong ways of dealing with them.

What can you do to help decrease FOR to a reasonable level?

• Support groups. There is increasing evidence that being part of a group offers a uniquely supportive and normalizing experience for many (but not all) people. Group therapy has the ability to enrich one’s quality of life and to help prevent the onset of depression. There is an added benefit with a professional facilitator. For people who are reluctant to meet face to face, there are numerous options online.
• Challenge your thinking. We all have automatic thoughts that are based on our experiences, not on reality. When we are fearful or worried, two things happen: we overestimate that something bad will happen, and we assume that the bad thing won’t just be bad, it will be catastrophic.

Suppose you start to have pain somewhere. Naturally, your first thought is that your cancer has recurred. At this point, rather than immediately going into a full-blown panic, you have a choice. Ask yourself, “Is there another potential cause for this?” It may be that you were out working in the garden, lifted something, tried a new exercise, etc. Most of the time new symptoms are not due to a recurrence of cancer. If symptoms persist for two weeks or are severe, seek medical care.

The next question to ask is, “What is the worst thing that could happen?” Again, many people get stuck here because they assume their cancer has recurred.  Most of the time, the worst is not going to happen. But if it did, the next question is, “Could you handle it?” While no one would want a recurrence, the fact is that most people could handle it if they had to.

• Learn how to relax. The ability to relax allows for clearer thinking when problem solving and makes people confident they can cope with stressful situations when they are starting to feel worried. There are many relaxation techniques, but a simple one to start with is slow, deep breathing. It can be helpful to close your eyes while doing this and picture yourself in a favorite place that is calming to you, thinking of everything that place encompasses—sights, smells, sounds, sensations, etc.
• Mind/body practices. These are a variety of techniques designed to enhance the mind’s capacity to influence bodily functions and symptoms. They also help to decrease anxiety, depression, and assist with coping skills. Examples include: relaxation, hypnosis, visualization, guided imagery, biofeedback, massage; meditation, therapies involving spirituality, visual art, music, or dance; yoga, tai chi, and qigong work with the body’s energetic fields and are likely to exert a strong effect through a mind/body connection.
• Journaling. This is very helpful for people who tend to ruminate on the same thoughts repeatedly. No editing! A gratitude journal consists of writing three things you’re grateful for each day. That’s it! Gratitude journals have been shown to decrease distress and improve coping and functioning.
• Choose whom you spend your time with carefully. Avoid people and activities that deplete your energy and make you feel worse after you’re finished (when you have the option).

In closing, most cancer survivors deal with some level of FOR off and on for years, if not their lifetimes. If you find that it is getting in the way of your day-to-day life and keeping you from functioning, talk to your doctor and consider seeking psychotherapy. Most cancer treatment facilities have a referral list of potential therapists.

Please let me know if there are any topics you would like me to address in future posts.

References:

1. Carlson LE. (2010). Meditation and yoga. In JC Holland, WS Breitbart, PB Jacobsen, MS Lederberg, MJ Loscalzo, & R McCorkle (Eds.), Psycho-Oncology (2^nd Edition, pp. 429-439). New York: Oxford University Press
2. 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
3. Kissane DW. (2010). Survival following psychotherapy interventions. In JC Holland, WS Breitbart, PB Jacobsen, MS Lederberg, MJ Loscalzo, & R McCorkle (Eds.), Psycho-Oncology (2^nd Edition, pp. 479-482). New York:  Oxford University Press
4. Lee-Jones C, Humphris G, Dixon R, Bebbington Hatcher M. Fear of cancer recurrence—a literature review and proposed cognitive formulation to explain exacerbation of recurrence fears. Psycho-Oncology. 1997:6;95-105
5. Melchior H, Buscher C, Thorenz A, Grochocka A, Koch U, Watzke B. Self-efficacy and fear of cancer progression during the year following diagnosis of breast cancer. Psycho-Oncology. 2013:22(1)39-45

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