By Gozde Ozakinci, University of Stirling 

Cancer is very much associated with scary statistics. For instance, like the one ‘1 in 2 people will develop some form of cancer in their lifetime’.  But there are encouraging developments too that suggests that cancer survival rates are improving.  The last count in 2018 suggests that there are nearly 44 million people who survived the cancer diagnosis and treatment in the world. This is welcome news to those who have experienced cancer diagnosis and treatment. 

The improvement in survival rates also means that more and more people live with the consequences of cancer treatment. One of these consequences is experiencing fears about cancer coming back. In the literature, it is defined as “fear, worry, or concern relating to the possibility that cancer will come back or progress” and recognised widely as one of the most significant issues that impact on the quality of life of those living after a cancer diagnosis. 

How common are these fears?

Answering this question is not straightforward as the studies have used different tools to measure fears of cancer recurrence. A systematic review of 130 studies showed that across different cancer sites and assessment strategies, 49% on average reported moderate to high degree of Fear of Cancer Reoccurrence (FCR), and 7% on average reported high degree. A more recent meta-analysis reported that one in 5 cancer survivors and patients experienced high levels of fears of cancer recurrence, indicating a need for specialised psychological support.  Moreover, these reviews show that these fears do not go away over time. Being women, of younger age, and having less education have been associated with higher fears of cancer recurrence.  One of the important factors that is associated with these fears is the experience of physical symptoms which can be interpreted as signs of cancer coming back.

What’s the relationship of these fears with psychological wellbeing?

Cancer survivors identify these fears as the major concern or one of the top 5 greatest concerns.  Not only are these fears a major concern for them but also up to 79% report that this is one of the most unmet needs.  Fears about cancer recurrence have been found to be related to lower quality of life, higher anxiety, depression, and distress. There is also indication that higher fears of cancer recurrence are related to increased health care use.  

Moreover, although majority of the research has been conducted with cancer survivors, a recent review shows that fears about cancer recurrence is also a problem for caregivers, with 48% reporting levels that would indicate need for psychological support.  Another review showed that caregivers’ fears can be as high as the survivors’ if not greater and the caregivers’ fears were associated with poorer quality of life in caregivers and survivors.

What are the features of clinical levels of fears of cancer recurrence?

It is clear that fears of cancer recurrence are a multidimensional phenomenon.  An expert consensus study suggested the following as key features of ‘clinical’ fears of cancer recurrence: 1) high levels of preoccupation; 2) high levels of worry; 3) persistency; and 4) hypervigilance to bodily symptoms. 

How do we measure these fears?

An early review of fears of cancer recurrence measures identified 20 scales and another review soon after found additional eight scales. There have been attempts for establishing a clinical cut-off score to identify those needing psychological support. The Fear of Cancer Recurrence Inventory is a 42-item measure that enables an in-depth assessment of these fears. It has several sub-scales and the 9-item Severity sub-scale is widely used which has a cut-off to identify those who need psychological intervention (≥22). Scales such as FCR4 and FCR7 are also being used as shorter measures with suggested percentiles for identifying those with moderate and high fears. To facilitate screening of these fears, 1-item measure has been put forward as well.

What are the effective ways of supporting cancer patients with these fears?

A meta-analysis of psychological interventions for fears of cancer recurrence showed that they can have a small but robust effect at the end of intervention which be largely maintained at the follow-up.  Cognitive Behavioural Therapies that were focused on processes of cognition such as rumination rather than the content and which aimed to change the way in which the individual relates to their inner experiences had larger effects. 

Practical recommendations:

1. Facilitate a conversation on fears: Some patients may not want to approach their health care provider about their fears of cancer coming back for fear of appearing ungrateful. But starting these conversations can be very helpful for the patient to facilitate further support. Validating those fears can be immensely helpful to the cancer survivors.
2. Provide information on signs of cancer: Talking through what might be signs of cancer that will warrant reaching out to their health care providers may provide opportunities for dispelling myths about cancer symptoms. 
3. Don’t forget the caregivers: While the focus on the cancer patient and survivor is necessary, healthcare professionals need to bear in mind that caregivers experience high levels of fear of cancer recurrence for their loved one and may need support too.
4. Screening is not enough: Although screening for these fears is helpful, there is a need to ensure that there is appropriate psychological support that can be offered to the patients and caregivers.
5. Watch out for signs of anxiety: Early signs of anxiety and changes in anxiety levels are associated with later increases in fears of cancer recurrence in the first year of treatment. Monitor for signs of anxiety frequently and provide support to prevent further escalation of these fears.