Fear of recurrence is one of the most prominent concerns for patients with cancer, but oncology team interventions may play an important role in helping.
As if going through a cancer diagnosis and its associated treatment journey was not enough, reoccurring fears of disease recurrence are thoughts that loom even in to survival.
Fear of recurrence is considered one of the most prominent concerns for patients following a cancer diagnosis. Defined as “fear, worry or concern relating to the possibility that cancer will come back or progress,” fear of recurrence can occur in both patients with curable disease and in those with advanced disease.
These are thoughts that are more prevalent among cancer survivors than one might think.
“On average, 49 percent of survivors of cancer experience moderate to high levels of fear of recurrence, and up to 70 percent of vulnerable groups such as young women with breast cancer,” Phyllis Butow, MClinPsych, MPH, Ph.D., Director of the Medical Psychology Research Unit at the University of Sydney, said in an interview with CURE.
“About 7 percent of patients experience severe and highly disabling fear of recurrence, where they are constantly thinking about cancer, find it difficult to focus on other things in their lives or plan for the future, and are constantly checking for signs of recurrence.”
To address this, researchers from the University of Sydney who issued a practical guide in the journal Cancer Network.
The researchers noted that fear of recurrence is a unique and significant mental health issue in its own right. Similar to other mental health issues, fear of recurrence occurs at different rates of severity.
“Fear of recurrence is different from general anxiety, in that it is very focused on cancer, and does not affect other areas of life,” Butow said. “People with existing mental health issues, such as generalized anxiety or health anxiety, may be at higher risk for severe levels of fear of recurrence. However, most people with clinically significant levels of FCR do not meet criteria for a specific mental health issue, suggesting FCR is a unique and significant mental health issue in its own right.”
In some cases, fear of recurrence can be mild and ease over time. This can mean people experience occasional thoughts, meanwhile things like follow-up appointments or hearing of another’s cancer diagnosis generates anxiety for a short period of time but resolves.
However, severe cases may have devastating results. Those who experience moderate to severe levels of fear of recurrence have more frequent thoughts about cancer, meaning these thoughts occur more than once a week, any they may occur without a separate event triggering these thoughts.
“People with severe fear of recurrence report constant and intrusive thoughts about cancer; they tend to interpret mild and unrelated symptoms as a sign of recurrence; they feel unable to plan for the future in case cancer intervenes and disrupts plans,” Butow said.
In addition, severe fear of recurrence may make people feel they cannot control these thoughts, and in turn, can cause increased distress.
“Depending on their coping strategy, they may over-monitor for signs of cancer activity, constantly surf the web, overuse health services in search of reassurance, and/or fearfully avoid screening and follow-up,” she added. “Research has shown a strong association between fear of recurrence and depression, poorer quality of life and impaired functioning.”
Of note, fear of recurrence cannot improve without seeking intervention, for which oncology health care teams can play a vital role.
“Patients can ask their doctor for relevant information if they are not sure of their prognosis or signs of recurrence,” said Butow. “They should discuss their fears with their general physician or oncologist, who will be able to provide some help or refer them to a psychosocial staff person who specializes in this.”
In doing so, physicians can provide patients with adequate information, while also normalizing fear of recurrence for them. In addition, they may offer appropriate patient referrals.
“Discussing their fears is the first step,” Butow added. “Patients may request information so they are clearer about what the likelihood of recurrence actually is, what they should be looking for in terms of signs of recurrence, what is the appropriate follow-up schedule of tests and screens, etc. They can also ask about other help available to help them to manage their fears.”