Mindfulness, reframing can ‘break the cycle’ of fearing cancer recurrence
A cancer survivor once told Tara Sanft, MD, that living with the ongoing possibility of recurrence is like “walking around with a gun to your head.”
“I thought that was a really strong visualization of that fear,” Sanft, a medical oncologist and director of the survivorship program at Yale Cancer Center and Smilow Cancer Hospital, told Healio. “You can feel it there, and you know that at any moment it could go off. That’s a difficult feeling to live with.”
Because the risk for cancer recurrence can never be zero, it’s not possible to remove the figurative “gun.” That leaves one other approach: to learn to notice and experience that feeling with greater ease.
“No physician is ever going to give an ironclad guarantee that the cancer will never come back,” Shelley A. Johns, PsyD, HSPP, ABPP, associate professor of medicine at Indiana University School of Medicine and research scientist at William M. Tierney Center for Health Services Research at Regenstrief Institute, said in an interview with Healio. “There’s always going to be a sense of vulnerability when living with uncertainty. If someone has high tolerance for uncertainty, they’re not going to be as bothered by that sense of vulnerability; they’re going to do everything they can to maximize their health and prevent recurrence, but they’re going to be more comfortable with the uncertainty.”
For survivors, managing to live with this uncertainty without allowing it to preoccupy their thoughts is an important component of healthy long-term survivorship.
“A lot of the uncertainty tends to get less prominent as time goes on,” Sanft said. “It tends to be strongest right after treatment ends, and after years and years go by, the uncertainty tends to dissipate.”
Acceptance and commitment therapy
For much of her career, Johns has helped patients with fear of cancer recurrence through Acceptance and Commitment Therapy (ACT). This approach encourages accepting the presence of fear without excessive rumination and committing to taking steps that align with the individual’s values and goals.
“The ‘acceptance’ part isn’t about liking or approving of the situation — nobody likes cancer,” Johns said. “With ACT, we are learning how to notice and accept uncomfortable thoughts and feelings. There’s nothing we can do to stop them, but there are strategies cancer survivors can use to cope more effectively with the fear.”
Johns said simply acknowledging and accepting the fear might feel at odds with American culture, which encourages getting rid of or escaping unwanted feelings.
“We are hardwired to get rid of unwanted feelings — we just want to feel good; we want to be happy,” Johns said. “Acceptance is the hardest part because it involves accepting what is here without getting too caught up in it. A cancer survivor might think, ‘I’m feeling fearful today. I’m getting my mammogram or colonoscopy. I’m going to have to wait for the results and I can’t stand it. What if the results are bad?’ With ACT, we train survivors to focus their attention on the present moment and treat themselves with compassion.”
The “commitment” aspect of ACT involves identifying one’s core values and taking an action in the moment that is meaningful and affirms those values.
“We support survivors in getting crystal clear on their core values and what’s meaningful to them — how they want to be and what they want to do in this life,” Johns said. “So when the fear shows up, and naturally it will, we don’t want them to waste precious energy trying to avoid or escape their fear. We want them to learn how to let it be while taking an action that moves in the direction of their values.”
By taking this type of action, Johns said survivors can disrupt the tendency to ruminate.
“Many of us cope with uncomfortable thoughts and feelings in ways that make our lives harder in the long run — drink or do drugs or watch Netflix all day,” she said. “A healthier and more effective approach is to ask ourselves, ‘What do I want my life to be about? What can I do right here, right now that is simple and consistent with my values?’ That can help break the cycle so the downward spiral doesn’t continue.”
Johns and her colleagues at the Regenstrief Institute conducted a pilot, randomized controlled trial of ACT among 91 post-treatment breast cancer survivors with clinical fear of recurrence. For the study, published in Cancer, the researchers randomly assigned the survivors to one of three groups: ACT (6 weekly, 2-hour group sessions), survivorship education (6 weekly, 2-hour group sessions) or enhanced usual care (one 30-minute group coaching session with survivorship readings).
Severity of fear of recurrence served as the primary outcome, with avoidant coping, anxiety, post-traumatic stress, depression, quality of life and other related variables as secondary outcomes. Researchers evaluated these measures at baseline, and then immediately, 1 month and 6 months after the intervention.
The researchers found that although each group demonstrated reductions in the severity of their fear of recurrence, the ACT group yielded significant improvements at each assessment. The between-group differences at 6 months significantly favored ACT compared with survivorship education (Cohen d for effect sizes, 0.8; P < .001) and enhanced usual care (Cohen d, 0.61; P < .01).
“We found over the course of the 6 months of this study that the ACT intervention showed a distinct advantage over the other two arms in terms of less fear of recurrence and more effective, less avoidant coping,” Johns said. “The approach continued to help — it was radically different from the way most people interact with their unwanted thoughts and feelings.”
Reframing and mindfulness
According to Angela Khairallah, MSW, LCSW, a licensed clinical social worker for Yale New Haven Health Smilow Cancer Hospital Breast Center & Survivorship Clinic, using principles of cognitive behavior therapy can be helpful in helping survivors address their fears of recurrence.
“We’ll talk to them about how to reframe their thoughts by looking at what’s factual vs. what’s maybe imagined, and talk about the connection between thoughts, feelings and behaviors,” Khairallah told Healio. “We also focus on what is in their control and what is not.”
She said she is also a proponent of mindfulness but acknowledged that some may struggle with achieving this goal.
“It’s fairly common for patients to say, ‘I don’t know how to do meditation. It’s so hard for me to clear my thoughts,’” she said, “It is hard; we’re all human beings and it’s very difficult for us to make our minds go totally blank. What’s important is to encourage patients not to focus on the fact that their minds wander. Just recognize that it is happening and then bring your mind back to the present moment and focus on your breathing.”
Khairallah said she tells survivors that this skill takes a while to develop, and that they may never reach a point where they are able to completely clear their thoughts, which is not the goal.
“There’s so much research to support that mindfulness and meditation are so good for our souls, minds and bodies,” she said. “However, it can become stressful for some patients. It might not resonate with them, and that’s OK. The trick is finding what’s going to work for you to help you feel less anxious and calmer — and don’t stress over it.”
For more information:
Shelley A. Johns, PsyD, HSPP, ABPP can be reached at firstname.lastname@example.org.
Angela Khairallah, MSW, LCSW, can be reached at email@example.com.
Tara Sanft, MD, can be reached at firstname.lastname@example.org.