Managing fear of cancer recurrence

Fear of recurrence is a common and often disruptive concern for people after breast cancer treatment. Living Beyond Breast Cancer and Sharsheret partnered to share practical information about fear of recurrence and how to manage it from licensed psychologist Pamela J. Ginsberg, PhD.

Fear of cancer recurrence is the fear that cancer could return or progress in the same place or another place in the body. A growing body of research suggests that there is a substantial need for fear of recurrence to be addressed by healthcare providers as part of cancer care. Addressing these fears is one of the biggest complaints and unmet needs of people after cancer treatment, and fear of recurrence has a significant negative impact on quality of life. People who have been treated for cancer consistently rate the need for help with this problem as second only to managing physical risk of recurrence. Additionally, as the country and the world struggle to manage the dangers of a global pandemic, this has complicated the management of fear of recurrence for cancer patients and survivors.

It is important to recognize that fear of recurrence is almost universal, affecting up to 97 percent of people after cancer treatment! However, not everybody finds that it lasts very long, and not everybody is impacted in the same way and with the same severity. There are a few things that make a person vulnerable to experiencing more severe fear of recurrence than others. Some of these things include being young, being a mother and in a current caring role, having a history of trauma, how intrusive the illness is in your life, having low optimism in general, having pain or more severe physical symptoms, and lacking a strong support network.

When fear of recurrence is a significant problem, it can have a real impact on you and your family. Some consequences of this can be feeling isolated, lower overall quality of life, increased fear and anxiety in many areas of life, preoccupation with the illness, and not making future plans. When I see high fear of recurrence in my patients, it’s often as if they are frozen in their lives. The fear can be paralyzing and cause a person to limit activities, withdraw from important relationships, and experience a sense of dread and impending doom. At a time when others around you are celebrating the end of your treatment, you can find yourself holding your breath, waiting for the other shoe to drop. As we grapple with managing COVID-19 in our lives, heightened anxiety has been noted for many people affected by breast cancer because access to care providers is more limited or has changed. This can trigger the fear of recurrence problem for many who are already struggling with this in their lives.

Fortunately, there are steps that you can take to manage fear of recurrence effectively. I always encourage my patients to experiment with different strategies to find a formula that works well for them. I find that it is often a combination of strategies, focusing on different aspects of the experience, that is helpful for a person struggling with fear of recurrence. These strategies can be broken down into three basic categories:  thought patterns, emotional regulation, and lifestyle strategies.

Thought patterns

When looking at thought patterns, it is important to look at your thoughts about thoughts. This is known as metacognition. Patients often have unhelpful thoughts about the impact, importance, and control of worry. I hear patients tell me things like, “If I worry about the cancer coming back, I will be prepared for it,” or “If I don’t worry enough, the cancer will sneak back when I’m not looking.” These statements tell me that patients think that their thoughts will influence a cancer recurrence. These are superstitious thoughts and not particularly helpful if you are experiencing high fear of recurrence. It is inaccurate to think that worry is somehow protective, either emotionally or physically. By examining your thoughts about your thoughts, you may find that you are relying on superstitious, or untrue thoughts, which serve to exacerbate the anxiety and fear rather than alleviate them.

In addition, some people experience something called “cognitive attentional syndrome.” This is an attentional bias toward threat-related information. In other words, you may pay too much attention to things that may, or may not, be related to cancer recurrence, such as pain, rashes, mood changes, concentration problems, and so forth. People think that excessive checking behaviors (such as multiple breast self-exams per day or checking for rashes or other symptoms each day) will calm their worries, but this attention bias actually serves to reinforce and increase worry and fear. I encourage patients to reduce checking behaviors slowly over time to lessen their worry.

Emotional regulation

In terms of emotional regulation, I strongly encourage my patients to experiment with mindfulness meditation practices, which help train the brain in acceptance, compassion, and attention. These practices have the effect of softening emotional reactiveness, which reduces overall suffering. Many are intimidated by the practice of meditation, but there are many good apps, videos, podcasts, and books that teach these practices in a practical and straightforward way. Support groups for cancer patients and survivors provide the social support and emotional outlet that many people need to talk through the emotional roller coaster of a cancer diagnosis, treatment, and survivorship. Both face to face and virtual support groups have shown to be very effective in this regard.

Lifestyle strategies

There are also several lifestyle practices that have proved to be helpful in reducing fear of recurrence. Paying attention to sleep, exercise, nutrition, and hydration are the basics of good health. When survivors and patients are attending to these health-related practices, they feel more in control both physically and emotionally, which reduces the worry and fears about cancer recurrence. Also, movement therapies such as yoga, tai chi, and stretching have all been associated with decreased symptoms of fear of recurrence.

Fear of cancer recurrence is a common experience, but it can be very disruptive to your life. If you are continuing to struggle and are concerned about the impact it has on your quality of life, seek counseling by a professional therapist who is trained in working with cancer patients. Having cancer is very hard, and recovering from it both physically and emotionally is a process. Be gentle with yourself and your loved ones as you navigate the process.

Read more content about fear of recurrence from Living Beyond Breast Cancer. If you would like to speak with a person who has been in a similar situation, try the LBBC Breast Cancer Helpline to be matched with a volunteer.