How to manage the fear of cancer recurrence (FCR)

Key takeaways

• You are not alone – nearly half of all people living with cancer and living beyond cancer struggle with the fear of cancer returning.
• Understand your personal triggers – everyone is unique, so make sure you learn what heightens your fear of cancer recurring.
• Talk about what you’re experiencing – whether with a friend, family member, trained professional or online forum.

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Due to improved early detection of cancer and treatment advances, people today tend to be aware they have cancer earlier and also live longer knowing one day their cancer might return. 

A study in 2019 (Almeida et al, 2018) found that a fear of cancer recurrence (that your cancer returns) – or FCR – was reported by nearly half of all people who had had the disease, with all of them experiencing it with moderate to high-levels of intensity.

We asked two of our Perci Professionals, psychologist Dr. Simone Ruddick and cancer coach Claire Taylor, to tell us more about FCR, with a focus on understanding and managing this intense emotional obstacle, felt by so many people living with cancer and living beyond cancer.

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How can I tell if what I am experiencing is fear of cancer recurrence?

FCR can be characterised by cancer-specific worries, i.e. feeling scared or terrified of cancer returning. These could be feelings of fear and paranoia, high levels of worry, rumination, intrusive thoughts and distress. 

People regularly report the challenges they experience in living with great uncertainty, which can make planning for the future feel difficult or even pointless. You may also experience long lasting images or thoughts about cancer or death, becoming convinced the original cancer will come back.

Why can’t I get over the fear of cancer recurrence, even when I have had good results?

FCR can be expected because cancer has been a real threat to your life. Fear of cancer recurrence (FCR) is among the most commonly reported problems and one of the most prevalent areas of unmet needs for cancer survivors (Simard et al, 2013). Fear of recurrence has been found to be common in breast cancer survivors. Half of all survivors experience some fear, but in 20-50%, the fear is clinically significant and profoundly affects their lives (Ashton, 2018).

However, if experienced in excess it can cause an impairment of quality of life. If living with fear of cancer recurrence is too challenging then you should seek support. Talking to someone about your fears and worries can be really helpful, whether that’s a friend, family member, support group, cancer nurse specialist, spiritual leader or trained therapist.

How can I ease the fear of cancer recurrence?

• Normalise it – it is important to remember FCR is common and that you are not alone in feeling this way.
• Know your personal triggers – people often describe the following: feeling sick or experiencing physical symptoms (like fatigue), anniversaries, being reminded of cancer by seeing someone who is ill with the disease, seeing or hearing references in the press or on social media, attending funerals and attending their own medical procedures or appointments.
• Explore your feelings – try to understand whether the fear you’re feeling is ‘known’, for example fearing going through certain treatments again, or ‘unknown’, like the uncertainty of the disease returning or death itself. Both are completely understandable but in knowing their origin and labelling them, it may help you feel more in control.
• Practice controlled breathing – it is possible to manage the associated anxiety and worry of FCR through breathing exercises, and relaxation and mindfulness techniques, often people find this to be a useful starting point.
• Talk and share what you’re experiencing – some people find it helpful and feel less alone when they share their thoughts with people in a similar situation in a support group or by joining an online forum.

Where can I get further support for fear of cancer recurrence?

A cancer coach or psychotherapist can both be helpful support if you are experiencing FCR.

A cancer coach would be keen to understand how your fear reveals itself. They would explore the relationship between your thoughts, feelings and behaviours, looking at unhelpful thought patterns and what events may have triggered them. Their aim would be to help you recognise more constructive thoughts and behaviours, to reduce feelings of fear and enhance feelings of control.

There is a spectrum of FCR severity and if you are experiencing a higher level of fear, a cancer coach may suggest specialist psychological input. Current psychological treatments for FCR draw from a variety of models including, Supportive-Experiential Therapy (SET), Cognitive Behavioral Therapy (CBT), Mindfulness and Acceptance and Commitment Therapy (ACT). The aim would be  to help you accept things that are not within your control and focus attention towards actions that can enrich and improve your life.

If you are a family member or friend of someone living with or beyond cancer who is experiencing fear of cancer recurrence, find out how to support someone with cancer, here.

Find out more about psychologist Dr. Simone Ruddick and her availability. Or read cancer coach Claire Taylor‘s Perci profile and book an appointment today. 

While we have ensured that every article is medically reviewed and approved, information presented here is not intended to be a substitute for professional medical advice, diagnosis, or treatment. If you have any questions or concerns, please talk to one of our healthcare professionals or your primary healthcare team.