Kathleen Ashton, PhD, a health psychologist at Cleveland Clinic who works with breast cancer patients and patients at risk for breast cancer, and a faculty member of Lerner College of Medicine, both in Cleveland.
Bottom Line: How to overcome fear and start living again
You made it through cancer treatment. You should be feeling free and happy, but you can’t stop feeling like there’s a sword hanging over your head. For many, if not most, survivors, fear of cancer coming back is a persistent concern. It can affect quality of life for many years after treatment, and for some, the fear becomes severe and disabling.
The risk of recurrence varies widely between types of cancer. For each type of cancer, the stage, cell type, treatment and genetic makeup of the patient also affect risk of recurrence. For some common cancers like colon, breast and prostate cancers, the overall risk is about 20% to 30%, but for others, such as bladder cancer and lymphoma, it can be twice as high, so it’s normal for patients to have worries.
But for some, normal worries build into significant fear and anxiety…into a condition that even has its own name, FOCR—fear of cancer recurrence. Some people are at higher risk for FOCR than others, such as those whose cancer has a high recurrence rate, such as ovarian, lung and brain cancers. Another risk factor is having a history of anxiety or depression before cancer.
People with FOCR are unable to escape worry and anxiety. Similar to people with PTSD, they may avoid anything that reminds them of cancer, including skipping follow-up appointments and cancer surveillance testing—the very things that could help protect them. Other clues to watch for include:
Obviously, FOCR will affect your quality of life. If you have symptoms, let your doctor know so it can be diagnosed and, most important, treated.
Step one to manage FOCR is a cancer survivorship plan, which should be set up with your cancer team soon after treatment. This is a must for any cancer survivor, so if you’ve been putting it off or have one but aren’t following through, it’s time for a reboot. A survivorship plan includes…
If you’ve been afraid to verbalize any of these issues (maybe you feel talking about them makes recurrence loom even more), you might be surprised to learn that, for many survivors, having a plan actually reduces unreasonable fears of recurrence.
Feeling that life is out of your control is one of the hardest things cancer survivors live with. Taking back some control with lifestyle changes that reduce your risk of recurrence can be empowering. For many cancer survivors, these include:
Self-help strategies can also help. You might practice a formal stress reduction method such as meditation or guided relaxation or join a cancer recovery support group.
It can be difficult to cope with FOCR alone. Treatment from a mental health provider can help you conquer fears of recurrence. Effective treatments include:
Talking about cancer recurrence and planning for a healthy survivorship will control FOCR for most people, allowing for an active recovery and a full life.