After a person successfully finishes breast cancer treatment, there are often lingering side effects from the disease and the treatment itself. One thing that lingers is the fear of recurrence. A new study finds that this fear can impact multiple aspects of a person’s life when it’s severe.

Research recently published in the journal Supportive Care in Cancer involved surveys of nearly 350 breast cancer survivors to understand how fear of recurrence factored into their lives. The questions focused on five areas: a person’s emotional, behavioral, cognitive, relational, and professional life. The survey included three open-ended questions to get a broader understanding of what each person was experiencing. The overall goal is to use this information to help survivors navigate this fear.

Shelley Johns, senior author and researcher-clinician with the Regenstrief Institute, explains, “Study participants were reportedly disease free and trying to rebuild their lives during their post-treatment survivorship. Our findings provide clarity about how breast cancer survivors are impacted by fear of recurrence and insight into how they cope with this understandable fear.”

The surveys showed that the level of fear differed, with some experiencing mild fear that occasionally impacted their lives, and some experiencing severe or clinical fear that was easily triggered across many areas of their lives. In all, 74% of respondents were experiencing the latter, which may involve avoiding social situations and needing to lie in bed to avoid thinking about recurrence.

Across respondents, stress, irritability, and sadness were common. Some reported that the fear often interrupted their train of thought, even at work, while others said being around their families was hard because they found themselves wondering how many more Christmases and birthdays they would have with their children. There was also embarrassment reported among survivors who thought they were worrying more than others. Among those with the greatest fear, there were more frequent impacts to different areas of life.

Most participants reported using some sort of coping strategy to navigate their fear, too. That included being positive, making healthy lifestyle choices, making the best of each day, prayer, meditation, avoiding things that triggered thoughts of recurrence, and talking to family members who had lived with cancer longer than them.

Two examples of survey responses include: 

“It motivates me to maintain healthy habits. Such as eating five servings of fruits and vegetables, working out and drinking less alcohol. It also motivates me to maintain mental health and physical health.”

“Cancer is all around us. Everything is a trigger. Anniversaries, other family/friends’ diagnosis, commercials about drugs, social media, etc. …it’s a daily thought or a daily emotion.”

The researchers say their study suggests patients may not have adequate means of coping and doctors should discuss fear of recurrence regularly with survivors. They could also provide data on risk and how they can reduce it. Ultimately, the team hopes more research can help develop interventions for survivors.