Fear of cancer recurrence (FCR) is considered one of the most prominent concerns for patients following a cancer diagnosis – a concern nurses can address when creating optimal survivorship care.
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. Yet, until recently, this was a poorly addressed issue in clinical care.
“Fear of recurrence has only begun to be recognized as an important clinical issue in the past ten years, as the number of people surviving cancer has grown,” Phyllis Butow, MClinPsych, MPH, PhD, director of the Medical Psychology Research Unit at the University of Sydney, said in an interview with Oncology Nursing News.
“With improved treatments, cancer is now being seen as a chronic disease, and many people are living for a long time after cancer diagnosis and treatment. Even those whose cancer has spread are now being offered treatments such as immunotherapy with potential for cure. But little is known about the long-term impact of these new treatments meaning that those taking them are exposed to even more uncertainty.”
To address these limitations among oncology health care teams, researchers from the University of Sydney issued a practical guide for clinicians in the journal Cancer Network.
In some cases, FCR 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 FCR 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.
In addition, severe FCR may make people feel they cannot control these thoughts, and in turn, can cause increased distress.
“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.”
Screening and Intervention
In the guide, the authors recommend that nurses and other members of the health care team screen for FCR, particularly at the end of treatment and during follow-up, when cancer survivors may have less contact with the health system.
In addition, repeated assessment is key. “While a single high fear of recurrence score may not be concerning, sustained high fear of recurrence will need to be addressed,” Butow added.
This can be done conducted through a number of short, reliable and valid instruments that are now available. And even more convenient, they can be completed on paper or electronically, which means patients can complete them while in the waiting room and bring it into their consultation.
“A high score can be used to trigger a conversation, and if relevant, a referral for psychosocial intervention,” Butow said.
She noted that it is also important to verbally ask the patient about fear of recurrence at key follow-up consultations, as some patients may more readily respond to a direct question than to complete a questionnaire.
“A question can be framed as follows: ‘Many people I see worry a lot about their cancer coming back. That’s normal and expected after a cancer diagnosis. But if the worry is distressing you or is starting to stop you getting on with your life, we should do something about it. There are things we can suggest to help you manage these worries. So, has this been a problem for you?’” Bustow explained.
After a patient has been screened and identified, it is important for nurses to help them understand this is common, normal, and justifiably distressing.
“Second, give patients clear information about their prognosis, signs of recurrence of their cancer, which symptoms to worry about and which not to, and how to look after their health to minimize the likelihood of recurrence,” said Bustow.
However, she noted, it is best not to order extra tests for anxious patients, as this tends to maintain the anxiety in the long-term.
Lastly, if FCR is moderate and persistent, nurses should direct patients to appropriate resources, such as booklets and online interventions.
“Patients with high fear of recurrence may need referral to a psychologist or psychiatrist for face-to-face counselling,” said Bustow. “There are now a number of such interventions which have been shown to be effective in randomized controlled trials in reducing fear of recurrence.”
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