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 experience of FCR
- Talk about what you’re experiencing – whether with a friend, family member, trained professional or online forum
Due to improved early detection of cancer and treatment advances, people today tend to become aware they have cancer earlier and also live longer knowing one day their cancer might return. A study in 2019 found that fear of cancer recurrence (FCR) was reported by nearly half of all people who had been diagnosed with the disease, with all of them experiencing it with moderate to high levels of intensity.
We asked three of our Perci Professionals, psychologists Dr Simone Ruddick and Dr Lucy Davidson, 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 and beyond cancer.
“I’m two years post-breast cancer now but the fear of recurrence is with me all the time. When I was first diagnosed it was because I’d just scratched an itch and found a small lump, but the scan showed it was the tip of the iceberg. I was told that my breast was ‘riddled’ with cancer and that it was a threat to my life. I thought, ‘If that can happen once, it can happen somewhere else’. It turns out that the type of cancer I had can only occur in the breast, but I was never told that, so for a whole year I worried about it. I went from almost never checking my breasts, to checking them almost daily.
In the run up to my first annual mammogram since my treatment, I was convinced they were going to tell me there was cancer in the other breast. I almost thought, ‘Good, because then I could have a mastectomy on the other breast and I won’t have to worry any more’. Friends and family would say, ‘Oh I’m sure you’ll be okay’. They just didn’t get it. Then the mammogram was clear and to them, that means the cancer is gone, so they all just moved on. But I’m still here. No one seems to understand FCR.
I was diagnosed with PTSD last year. I was having panic attacks as well as hallucinations of being told I had cancer somewhere else. It was like a projection; a film that I was watching. The anxiety is just there all the time. I’m now having counselling, which has been really helpful for me, but I don’t think you’re ever the same person after having cancer.”
Melanie, Perci Health member
How common is FCR?
If you think you’re experiencing fear of cancer recurrence (FCR), you certainly aren’t alone. FCR is among the most commonly reported problems and one of the most prevalent areas of unmet needs for people living beyond cancer. Another study found that half of a study group living beyond breast cancer reported some fear, but, in 20–50%, the fear was clinically significant and profoundly affecting their lives. In short: FCR can be expected because cancer has been a real threat to your life. However, if experienced in excess, it can impair your quality of life, and needs to be addressed.
It can be human nature to assume the worst, to focus on the future rather than the present, and ruminate over the potential for bad outcomes. But these thoughts can have a huge impact on our mood and wellbeing.
Dr Lucy Davidson, Psychologist
What does FCR look like?
Dr Simone Ruddick describes FCR as characterised by cancer-specific worries: ‘You might feel scared or even terrified of your cancer returning. You might be experiencing feelings of fear or paranoia, high levels of worry, rumination, intrusive thoughts or distress.’ People living beyond cancer who are experiencing FCR might find that planning for the future feels difficult or even pointless. They might even experience long-lasting images or thoughts about cancer or death.
Dr Lucy Davidson recommends watching out for catastrophising, which can look like this: ‘I’m sure the pain in my back is my cancer recurring. That means it will show up on the scan I am having in a couple of weeks, and then I will need to have more treatment, which will probably make me really sick. How will I manage that with work and family life? And what if the treatment doesn’t work this time and I have six months to live?’ In this example, an initial thought about back pain has led to an end of life palliative pathway. ‘While that initial thought may be valid, the further thoughts are projections of things which may happen. They also may not,’ she explains.
Five ways to address FCR
While it’s reassuring for anyone living beyond cancer to know that they’re not alone in experiencing FCR, that knowledge is unlikely to help with the fear itself. Our professionals recommend five proven techniques to manage FCR and improve quality of life.
1. Know your personal triggers
People experiencing FCR often find it arises around particular events like anniversaries, meeting someone who also has cancer, seeing or hearing references in the press or on social media, attending medical procedures or appointments and going to funerals. Managing FCR begins with being able to see what’s coming up that might trigger a response.
2. Challenge negative thoughts
Often we don’t notice negative thoughts until they’ve spiralled into catastrophising. The good news is that catching them before they’ve had a palpable effect on our peace of mind is very possible, and something we can all learn. When you notice a negative thought, remind yourself that thoughts are not facts. Actually, much of what we think is based on our experiences, beliefs, and learned behaviours and is not always factually accurate. Ask yourself: can I absolutely know this thought to be true?
3. 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.
4. 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. Perci Health offers appointments with meditation and mindfulness specialists, and there are a number of excellent apps and resources to help you develop a breathing practice or find a meditation to address the way you are feeling.
5. Share what you’re experiencing
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.
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
Claire Taylor, Cancer Coach
The value of professional support for FCR
A cancer coach or psychotherapist can both be helpful if you are experiencing FCR. Claire Taylor explains: ‘As a cancer coach, I would be keen to understand how your fear reveals itself. I would guide you to explore the relationship between your thoughts, feelings and behaviours, looking at unhelpful thought patterns and what events may have triggered them. Our ultimate aim would be to help you recognise more constructive thoughts and behaviours, to reduce feelings of fear and enhance feelings of control.’
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 Behavioural Therapy (CBT), Acceptance and Commitment Therapy (ACT) and mindfulness. The aim of working with a psychologist 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.
Find out more about psychologists Dr Simone Ruddick and Dr Lucy Davidson, including their availability.
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.
References
Almeida et al, ‘Fear of cancer recurrence: A qualitative systematic review and meta-synthesis of patients’ experiences’. Mar 2019
Simard et al, ‘Fear of cancer recurrence in adult cancer survivors: a systematic review of quantitative studies’. Sep 2013
Ashton, ‘Fear of Recurrence Common Among Breast Cancer Survivors’. Jan 2018