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Dealing with the Fear of Cancer Recurrence

Susan Krigel, PhD

October 31, 2019

“I’m so afraid of the cancer coming back that I cry myself to sleep at night,” says Emily tearfully.

“I think about my cancer returning, too, but I decided that I didn’t want to live out the rest of my days in fear. I want to make the most my life,” responds Norah.

This exchange took place during a support group meeting for cancer survivors, and I have remembered it for a long time. What was memorable was not the concern that Emily expressed, but how Norah had used her fear to shape her life going forward.

As a psychologist, I help patients overcome their fears. But for cancer survivors, fear of recurrence is realistic, as most survivors have some level of risk of recurrence. In fact, cancer survivors are cautioned to be aware of symptoms that might signal a recurrence so the recurrence can be identified and treated in a timely manner. And cancer survivors may have “triggers” that remind them of their experience with cancer and the fear of its return. Routine follow-up exams and scans, anniversary dates of diagnosis or surgery, or hearing of the diagnosis of someone they know or the cancer-related death of a friend, relative or celebrity may serve as reminders.

Almost all cancer patients have a low to moderate level of fear of their cancer returning. In fact, a low level of fear of recurrence can actually be beneficial, because it can motivate survivors to follow recommendations regarding follow-up care, such as getting preventive cancer screenings and taking medications. In addition, this motivation may encourage survivors to improve their overall health by sticking to a healthy diet, exercising and quitting smoking.

But some survivors, like Emily, have such high levels of fear of cancer recurrence that it robs their daily life of joy. A high level of fear of recurrence comes with a cost, as it can decrease cancer survivors’ social, emotional and physical functioning. In fact, studies have shown that compared to survivors with a low level of fear of recurrence, survivors with high levels of fear of recurrence generally have a lower overall quality of life.

So how should cancer survivors balance the benefits of a low level of fear of recurrence with the negative consequences of a high level of fear of recurrence?

The recommendations listed below can help you manage your fear of recurrence so you can make it work for you rather than against you:

  1. Get an accurate understanding of your risk of recurrence from your oncology team.

  2. Have a plan: Learn the signs of recurrence, and what to do if you have symptoms.

  3. Ask your oncology team what you can do to decrease your risk of recurrence, including recommendations for diet and exercise.

  4. Focus on wellness: Put your energy into improving your overall health.

  5. Start low and go slow: Take small steps, and set realistic goals. Be patient with yourself when making changes.

  6. Do something that brings you joy daily. Sing in the shower! Watch a silly TV show!

  7. Be social. Strengthen and create meaningful relationships with others.

  8. Learn to live with uncertainty.

  9. Think about what gives your life meaning and what your values are, and live your life accordingly.

  10. Know when to reach out for help. If you are thinking about harming yourself or someone else, or if your anxiety is impairing your quality of life and you are unable to make changes on your own, ask your healthcare team for a referral to a therapist.

If you are a cancer survivor, try to adopt Norah’s philosophy of putting her cancer experience into perspective. Strive to make your cancer experience serve as the motivation to make your future life as meaningful and rich as possible.

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Bench To Bedside: Fear of Cancer Recurrence

In this video, Roy Jensen, MD, speaks with behavioral health specialist Susan Krigel, PhD, about the fear of cancer recurrence.

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