Fear of recurrence ‘almost universal’ among cancer survivors
For individuals who have survived cancer and endured its treatment, the threat of recurrence may never entirely fade away.
For some survivors, living with this uncertainty can become a source of unbearable, paralyzing fear.
“It’s important to understand that the fear of cancer recurrence is almost universal among cancer survivors,” Tara Sanft, MD, a medical oncologist and director of the survivorship program at Yale Cancer Center and Smilow Cancer Hospital, said in an interview with Healio. “This fear is independent of the disease type, and it’s also been shown to be independent of stage or actual risks. Some of the predictors of fear or recurrence have more to do with the individual herself than the cancer type or stage.”
Some degree of fear is to be expected, however, and for clinicians who follow cancer survivors in the short- or long-term, understanding how to help these individuals is essential.
“Although cancer survivorship starts at the time of diagnosis, the period following treatment completion is when fear of recurrence often emerges as patients lose the structure and support of active treatment,” Maurade Gormley, PhD, CPNP, RN, assistant professor/faculty fellow at NYU Rory Meyers College of Nursing, said in an interview with Healio. “We need to better monitor and support patients in this transition, and we need to pay attention to young breast cancer survivors who are uniquely vulnerable to fear of recurrence. These patients may need tailored interventions depending on their unique needs or respective developmental milestone, such as motherhood or relationships.”
Perception and emotional response
It would seem intuitive that individuals with a high risk for recurrence would report higher fear of recurrence.
In a study conducted by Gormley and colleagues, patients with a higher Oncotype Dx Breast Recurrence Score (Genomic Health) had greater overall fear of recurrence (P = .013) and perceived greater consequences of their cancer (P = .034) compared with those with lower risk scores. However, a multilinear regression analysis revealed that anxiety and maladaptive illness representations were the best predictors of fear of recurrence.
“The importance of these findings is that modifiable risk factors — anxiety, emotional response and perceived consequences — are better predictors of fear compared with nonmodifiable factors,” Gormley said. “We can’t change a patient’s genomic test results or their age, but we can potentially design interventions that target maladaptive illness representations and promote adaptive coping.
“It’s also important to note that just because a higher genomic risk for recurrence is associated with higher fear, this isn’t always the case — there are patients with a low risk for recurrence but high fear, and those with a high risk for recurrence but low fear,” Gormley added. “We need to better understand this discordance to develop interventions.”
According to Angela Khairallah, MSW, LCSW, a licensed clinical social worker for Yale New Haven Health Smilow Cancer Hospital Breast Center & Survivorship Clinic, survivors who face severe side effects or late effects of their cancer treatment are more likely to fear recurrence.
“If they’re having significant late or long-term effects related to their cancer treatment, it may cause them to have anxiety and remind them that this is a result of their cancer,” Khairallah told Healio. “It’s a constant reminder of what they went through and could potentially go through again.”
Introducing the topic
It is important that cancer survivors with potential for serious fear of recurrence have support systems in place, especially among their medical providers. This role can be shared between primary care clinicians, social workers, therapists and oncologists.
“Our social workers are extremely skilled in assessing patients and determining their degree of fear and how much it’s interfering in their lives,” Sanft said. “But as doctors, we play a role in this, too, because we have to ask the questions that allow patients to tell us how they’re feeling emotionally.”
Sanft said she initiates conversations about fear of recurrence in an open, nonjudgmental way.
“I might ask ‘how you are you doing with this emotionally?’” she said. “I try to ask all my patients that every once in a while, and it’s a lovely way to signal to patients that you’re open to hearing about anything that is going on with their emotions. They can take it in any direction they want.”
- Gormley M, et al. Cancer Nurs. 2021;doi:10.1097/NCC.0000000000000858.
- Gormley M, et al. Psychooncology. 2021;doi:10.1002/pon.5679.
For more information:
Maurade Gormley, PhD, CPNP, RN, 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.