A Closer Look at What Triggers It and What You Can Do About It
by Susan Krigel, PhD
Although a low to moderate level of fear of recurrence is normal, high levels can impair a person’s overall health and quality of life.
When you find yourself dwelling on thoughts of your cancer coming back, turn your attention instead to what you can do to improve your overall health.
- If you smoke, quit.
- Eat a nutritious, well-balanced diet.
- Be social.
- Learn to live with uncertainty. Mindfulness and acceptance can help.
- Start low, and go slow.
- Set realistic goals. You don’t have to run a marathon to get health benefits from exercising.
- If you don’t enjoy exercising, find a physical activity that you do enjoy.
- Get good sleep – and enough of it.
- Think about what gives your life meaning, and live accordingly.
Almost all cancer survivors have a few things in common: shock at being diagnosed, significant challenges in dealing with the side effects of treatment, and anxiety or worry when active treatment ends and the oncologist’s office says, “We’ll see you in three months.” Part of that worry is not knowing what lies ahead, wondering if your life will get back to normal and fearing that the cancer will return.
Fear of recurrence – a fear that cancer will return or advance – is nearly universal among cancer survivors.
Nearly all survivors have at least some fear of cancer recurrence, and it is not uncommon for it to last for years. As a psychologist who specializes in working with cancer survivors, I don’t try to talk people out of having a fear of recurrence. After all, most cancer survivors face some level of risk of their cancer recurring. My goal in working with survivors is to help them manage their anxiety about cancer recurrence and harness their fear of recurrence to help them stride toward a happier, healthier life.
Studies have shown that survivors with high levels of anxiety about recurrence have higher levels of depression and lower physical, cognitive, and social functioning. For example, a woman with a severe fear of recurrence may withdraw from friends and social activities, choosing instead to stay home watching TV or sleeping. The longer this pattern persists, the more depressed she becomes, furthering her downward spiral. Or, for another example, a colorectal cancer survivor becomes so immobilized that he cannot bring himself to return to the oncologist’s office for his follow-up scans.
Even low levels of fear of recurrence may spike when faced with a “trigger.”
Survivors often mention experiencing fear when facing follow-up scans and oncologist visits. Other common triggers are the anniversaries of being diagnosed, having surgery, or beginning or ending active treatment; hearing that a friend, or even a celebrity, was diagnosed with or has died of cancer; and anything reminiscent of treatment, like a certain smell. Additional triggers may include noticing a new symptom or a change in health.
As strange as it may sound, a low level of fear of recurrence can be beneficial.
Being concerned about your health can motivate you to follow your healthcare provider’s recommendations for follow-up screenings or medications. For example, many breast cancer survivors have aches and pains when taking Tamoxifen, but they are more likely to continue to take the medication when they understand how it can help reduce their risk of recurrence. In addition, survivors with a slight fear of recurrence may become more interested in improving their overall health, leading them to do things like quit smoking, improve their diet, or increase their level of exercise.
What is the best way to manage the uncertainty and anxiety relating to recurrence?
Discuss your concerns with your oncologist. Get an understanding of your individual level of cancer recurrence risk. Ask about how you’ll be monitored going forward and what symptoms you should take notice of. Find out whom you should call if you experience those symptoms. Having a plan in place can be helpful in reducing anxiety. And, finally, learn what you can do to reduce your risk of recurrence.
While a certain degree of cancer recurrence fear is normal, sometimes the fear can become overwhelming and difficult to manage on your own.
Seek professional help if …
- You’re experiencing a significant level of anxiety about recurrence
- You have not been able to reduce the level of anxiety on your own
- Anxiety is significantly impairing your quality of life
- You are in danger of harming yourself or someone else
Ask your healthcare team for a referral to a mental health professional.
Dr. Susan Krigel heads the Psychosocial Oncology program for the Midwest Cancer Alliance, the outreach arm of the University of Kansas Cancer Center. A licensed psychologist in Fairway, KS, Dr. Krigel focuses her practice on improving the mental health of individuals facing cancer. You can follow Dr. Krigel on Twitter @drsusankrigel.
This article was published in Coping® with Cancer magazine, September/October 2017.