Caregivers Worry, Too

Patients with fear of recurrence (FCR) “ruminate” at times, says Laurel Northouse, a professor of nursing at the University of Michigan School of Nursing in Ann Arbor, Mich. “That is, they worry about FCR to the extent that it interferes with the quality of their day-to-day lives.”

“For caregivers, this anxiety can be worse, she says, because they don’t get firsthand information. In a population-based study of the quality of life of cancer survivors and their family caregivers, Northouse and her colleagues reported “the strongest predictors for cancer survivors’ quality of life were family stressors, social support, meaning of the illness, and employment status, whereas the strongest predictors for family caregivers’ quality of life were fear of recurrence and social support.”

Northouse says caregivers might not be included in discussions that go on during clinical appointments. As a result, they can’t get their own questions answered and have more uncertainty, which often leads to higher fear of recurrence.

A powerful coping tool is acceptance, Northouse says. “FCR is a normal part of the cancer experience. It is important to accept that you will have some FCR. It’s not a sign of poor coping,” she adds. “But try not to let FCR consume you. Focus on the positive things in your life.”

Three-way communication can also be helpful. When caregivers are included in clinic visits, it facilitates communication between the patient, caregiver and health professional. When everyone is on the same page, it can reduce caregiver and patient uncertainty.

“It is helpful when families can find a new meaning in the illness,” Northouse says. “If people can reframe the cancer as something that can have positive effects for them, it brings the family closer and it increases the family’s ability to cope. And don’t ruminate about it. Try to break the cycle of thinking about it constantly. Try planning something fun for a few hours.”