Managing fear of recurrence

What is fear of recurrence?

Fear of cancer recurrence is defined as “the fear or worry that cancer could return or progress in the same place or another part of the body.” (Butow, Fardell & Smith, 2015).

The first thing to know about fear of recurrence is that it is common! Research reviewing studies of fear of recurrence found 39-97% of cancer survivors reported some degree of fear of recurrence, and on average about 73% experience fear of recurrence after active treatment ends.

Symptoms are not all the same though — they can fall along a spectrum from mild, to moderate and severe levels.

• Mild symptoms are usually triggered by an occurrence — an event, a date, a place — and they resolve fairly quickly, within a couple days.
• Moderate to severe symptoms are more frequent — they may feel ever-present, uncontrollable, and interfere with your daily life and routine.

Fear of recurrence can be brought on by certain “triggers” long after treatment has ended. Some examples of these are:

• Places that bring on memories of your experience with cancer, diagnosis or the treatments you had. For example, medical settings, going into the clinic or hospital, and getting scans like mammograms or prostate exams.
• Events that occur any time during the year. For example, anniversaries (“On this day 5 years ago, I was diagnosed with cancer, and it rocked my world”), holidays, life changes, others' stories about cancer (i.e., movies, shows).
• Physical changes in your body, such as getting a new pain or feeling fatigued. During treatment you’re paying very close attention to any physical changes/symptoms in your body, and now in survivorship these changes may spark fear that cancer has returned.

Symptoms of fear of recurrence are not just limited to the anxiety surrounding a cancer recurrence; there can be a variety of short-term and long-term mental and physical effects as well:

• Short term — Rapid heartbeat, high blood pressure, chest pain, shortness of breath, intense feelings of fear or dread, feeling detached from yourself or your surroundings, diarrhea, sweating, chills, dizziness or feeling lightheaded, trembling, nausea, heartburn, a change in appetite, and abdominal pain.
• Long term — Excessive worrying, insomnia, indecision, difficulty concentrating, exhaustion, isolation and depression.

How to manage fear of recurrence

Managing fear of recurrence starts with building mental resilience, which is a muscle just like any other — you have to use consistent practice to see big changes day-to-day.

First, start with identifying your triggers and the sensations in your body that follow. Sometimes we’re not even aware of how anxiety presents itself in our lives. For example, you have a follow-up appointment with your doctor on Monday — and know that causes some anxious thoughts — but how is that affecting your mood the weekend before? Are you able to take your mind off of the appointment? Are you able to enjoy your free time? Is your body relaxed? Are you sleeping well?

Identifying all the symptoms from a trigger will help you create a game plan for when fear of recurrence pops up. This game plan can look different, depending on the trigger, but with practice will reduce the resulting long-term and short-term stress from fear of recurrence. Some examples of game plans include:

• Inviting a friend to your follow-up appointments and asking them to distract you in the waiting room.
• Planning for something exciting and joyful on a cancer anniversary.
• Going for a walk and listening to a podcast the next time you can’t stop worrying.
• Keeping a journal on your nightstand and journaling your thoughts the next time you can’t sleep.

The important part about creating a game plan is to know that it may take some experimenting to find the right one. For example, a walk may not do the trick when you’re stressed, so you could try cuddling your pet. If that doesn’t work, try venting to a support group. Once you find the right game plan, practice makes perfect!

Finally, make a list of what you can and cannot control when it comes to cancer recurrence. You cannot directly control whether cancer returns or not, but you can do many things to minimize the likelihood that it will return. Some things you can control: following your survivorship care plan, making all of your follow-up appointments with your medical team, joining a support group to manage stress, making a nutrition plan with your dietitian, and creating an exercise routine.

If you have any questions about fear of recurrence, reach out to a member of your medical team and they can support you with resources and creating a game plan.