A recent investigation involving breast cancer survivors has revealed that the psychosocial difficulties they face significantly influence nearly all crucial aspects of their lives, including emotional, behavioral, cognitive, relational, and professional domains. Participants who exhibited a higher fear of cancer recurrence reported a wider variety of affected areas, and these areas were affected more often. Most survivors expressed a strong desire for purpose, belonging, control, and connections with others.
Breast cancer stands as the most common cancer globally. Despite advancements in early detection and treatments that have led to increased survival rates, many survivors continue to grapple with the fear of their cancer returning. For some, this fear is occasional; for others, it is a constant source of distress.
A recent examination of breast cancer survivors highlighted how this psychosocial hurdle affects nearly every vital aspect of their lives, specifically targeting emotional, behavioral, cognitive, relational, and professional spheres. Survivors with a pronounced fear of recurrence noted a broader range of impacted areas, and these areas were influenced more often.
“Participants in this study were reportedly free of disease and attempting to reestablish their lives after treatment,” explained Dr. Shelley Johns, a senior author and researcher at the Regenstrief Institute as well as at the Indiana University School of Medicine and the IU Melvin and Bren Simon Comprehensive Cancer Center. “Our research sheds light on the effects of fear of cancer recurrence on breast cancer survivors and offers insights into their coping mechanisms regarding this very relatable fear.”
The repercussions of fearing cancer recurrence varied from mild to severely disruptive. Women with minimal fear noted occasional disturbances, while those who experienced significant fear described it as persistent and easily triggered across several life domains.
Survivors with mild fear reported difficulties sleeping leading up to mammograms, whereas those with more severe, or clinical, fear often found themselves needing to withdraw from social events or resorting to hiding under blankets to escape thoughts of cancer. Notably, around 74 percent of participants reported experiencing clinical fear of recurrence.
A total of 347 women participated in the study’s open-ended survey:
- Many expressed feelings of stress, irritability, and sadness.
- Several mentioned that their fear ofcancer recurrence frequently disrupted their focus, such as affecting their work when thoughts about their illness arose.
- Survivors who felt that their worries were more intense than those of other breast cancer patients expressed feelings of embarrassment.
- Some found it challenging to be around family, constantly questioning how many more holidays and birthdays they might be able to spend with their children.
The paper’s title, “out of a dark place,” is a direct quotation from a breast cancer survivor who stated that she joined the study to help herself “get out of a dark place.”
Other survivors shared how fear of cancer recurrence specifically affected their daily lives:
- “It drives me to keep healthy habits like consuming plenty of fruits and vegetables, exercising, and cutting down on alcohol. It also encourages me to prioritize my mental and physical health.”
- “Whenever I detect any kind of pain or discomfort in the area where I had cancer, it makes me worried, anxious, and irritable.”
- “Cancer is everywhere. Everything serves as a trigger—anniversaries, diagnoses of friends and family, commercials about treatments, social media—it’s a constant thought or emotion.”
- “I find myself sitting for hours, doing nothing, avoiding turning on the TV. Hours can go by while I remain lost in thought, skipping activities, or getting lost while driving because I’m deep in contemplation, compulsively shopping online or collecting things.”
Survivors also described their coping strategies:
- “I try to maintain a positive outlook, eat healthily, take my medications, get enough sleep, exercise three times weekly, and remain hopeful.”
- “I avoid anything that triggers thoughts about recurrence, such as unfollowing certain social media accounts or leaving the room during cancer medication commercials.”
- “I try to divert my focus away from it. Additionally, I connect with family members who have lived through cancer for longer than I have.”
- “I engage in prayer, meditation, stay present in the moment, and focus on making each day meaningful.”
While many survivors cited avoidance of distressing thoughts and feelings as their predominant coping strategy, Dr. Johns, a health services researcher and clinical health psychologist, notes the need for further research to explore the effectiveness of different coping mechanisms.
In an often-overlooked aspect of clinical research, when participants were asked what they hoped to gain from their involvement in the study, many expressed a desire for a sense of purpose, belonging, control, and connections with others.
The paper concludes with the recognition that “fear of cancer recurrence is among the most prevalent psychological challenges faced by cancer survivors. Understanding the impacted life areas, coping strategies utilized before intervention, and their motivations for seeking support can aid in developing and implementing evidence-based interventions to effectively tackle the fear of cancer recurrence in breast cancer patients.”
This research was supported by the National Cancer Institute of the National Institutes of Health under grant numbers R01CA255480 (PI: Shelley Johns, PsyD) and T32CA117865 (PI: Victoria Champion, PhD), along with funding from the Walther Cancer Foundation (PI: Shelley Johns, PsyD).
