The end of cancer treatment often comes with some mixed feelings. On the one hand, people are usually happy to put treatment behind them. On the other, they are often concerned about seeing their oncologist and nurses less frequently. Plus, during treatment there is hope and often confidence that the treatment is doing what it is intended to do. When treatment ends, sometimes people fear they are not doing anything to “fight back” against the cancer and worry it may return.
A number of studies have identified “fear of cancer recurrence”—that is, the fear that cancer will come back or spread— as the first or second main concern at the end of treatment. Fear of cancer recurrence occurs for almost everyone who has been affected by a cancer diagnosis. While a certain amount of fear and worry is unavoidable, when fear of recurrence is high it can interfere with our ability to function day to day and to enjoy life. Research suggests that 40-70% of people are significantly bothered by fear of recurrence.
Why are some people bothered more than others?
Researchers have some ideas about why cancer is a particularly difficult illness to manage, as well as why some people have more difficulty than others. For example, illnesses that are very scary like cancer and which seem random, difficult to understand, and unpredictable generally cause more fear. Because cancer is unpredictable, certain body cues or symptoms that may not be at all serious may be seen as ominous.
We also know that people who have suffered more trauma in their lives, have many life stresses, or who were experiencing difficulty with anxiety or depression before cancer are more likely to struggle with high levels of fear of recurrence. Younger people, people with more side effects from treatment, and those with fewer supports in their lives (emotional, practical, or financial) also tend to have more difficulty.
When we have suffered a trauma like cancer, reminders such as anniversary dates, appointments with our doctors, media reports, a cancer diagnosis for a friend or, worse, a cancer death of someone we know are all experienced as more upsetting because of our own experience. These events are “triggers” that often stimulate increased fear for our future. Since a first experience with cancer is so difficult, people often wonder how they will cope with cancer a second time, particularly getting through treatments like chemotherapy. Also, it is common to worry about dying and how loved ones would manage.
There are a number of things that are helpful in managing fear of cancer recurrence and a few things that are not helpful. Let’s talk about the unhelpful ones first. These include things like repetitively seeking reassurance from our doctor, or excessively monitoring our bodies for any signs of recurrence. Sometimes we do these things believing that they will help us to feel safer or more certain that everything is OK. Unfortunately, behaviours like these can do the opposite. We receive reassurance but only feel better for a short time before we need more reassurance, for example, which can create a bit of an emotional roller coaster. Or, frequently checking our bodies gives us a measure of safety but never ends, keeping us overly focused on our fears. Another behaviour is avoiding things that remind us of the cancer, even to the point of not going for check-ups when they are scheduled. Although avoidance can help decrease fear in the short term, in the longer term it usually increases the fear and worry. The fact is, the future with cancer is always somewhat unknown. No one can tell you that cancer will never come back. What helps the most —besides time!— is learning to live with the uncertainty and to manage fear when it occurs.
While nothing will completely remove the fear of cancer returning, learning what triggers fear of recurrence and planning to manage these can help. Think about what triggers your fear the most. If it is a predictable trigger, like an appointment or a specific date, think about what you can do to look after yourself around that time. Do you need a less hectic week leading up to it or do you prefer to be busier? Are there certain people or activities that you find comforting or helpful in some other way? What kinds of things generally help when you feel stressed and worried? Plan to do more of those things.
If the trigger is unpredictable, such as being told something about someone, hearing a media report, or experiencing a symptom, plan ahead of time what you might do to manage those events. Would it help to have someone to talk to? To write about what you are feeling? Do you have a breathing exercise or a meditation recording that you can listen to? If you don’t, these can be very helpful, very brief, and can be downloaded onto a cell phone so you have it at your fingertips.
Managing your responses to symptoms deserves a special mention. This is a good thing to talk over with your oncologist. What symptoms should you be concerned about and which ones not? Aside from specific information about you and your cancer, generally speaking symptoms that come and go in a few days or less, are similar to symptoms you’ve had in the past, and are not severe are not likely to be serious. Those that are severe, completely different than something you have experienced before, and persistent deserve to be checked. Of course, such symptoms don’t necessarily mean cancer is back but could mean something else that needs to be addressed.
Here are a few other tips for managing fear of cancer recurrence:
- While cancer is uncertain, it doesn’t mean there is nothing you can do to look after yourself. People who actively take charge of their health generally feel better and more confident about the future. For example, there is more and more research that suggests regular physical activity can decrease the frequency of cancer recurrence. Basic guidelines suggest 150 minutes per week of moderately intense activity such as brisk walking is good for all of us.
- Reviewing your life values and priorities is often helpful after a traumatic event. Know what is important and meaningful to you and consider if your life aligns with that.
- Take time for yourself, whether to play, enjoy nature, to spend time with important people in your life, or something else. Such activities can be a source of peace, joy, and gratitude.
- Practice something that is deeply relaxing such as yoga, tai chi, mindfulness or other meditative practices.
- Connect with your spiritual side. Perhaps you grew up in a particular faith that is meaningful to you or perhaps there are spiritual practices outside of religion that you value. Reconnecting with your spiritual beliefs or developing new practices can be helpful in managing traumatic events like cancer, as well as fear of the future.
- Don’t be afraid to face your fears. When we try to run away from our fears, oftentimes they take on more strength. Being open to fear allows it to find a place in your life without it dominating you. If you have trouble doing this yourself, seek some help.
How do know if you need more help
Some people may benefit from seeing a mental health professional for help in dealing with fear of cancer recurrence. If you find that your fear is preventing you from doing things you want to do or robbing you of joy too often, consider seeing a counsellor with experience in managing fear of cancer recurrence.
Remember, nothing will completely remove fear of cancer recurrence. It will wax and wane from time to time. But, it can be managing so that it doesn’t prevent you from enjoying life!
 Of course, reassurance after a follow-up appointment is helpful. And paying attention to persistent symptoms and having them checked when warranted is also helpful. But neither is a permanent solution to fear and uncertainty.