Fear of cancer recurrence

After cancer treatment finishes it is very common for people to be worried about the possibility that cancer may return (recurrence). People are often told that they are “cancer free”, “in remission” or “there is no evidence of disease”. It is rare that doctors will say cancer is “cured”, as doctors cannot guarantee 100% that there are no microscopic cancer cells left. This can lead many people to feel worried about the chance of cancer returning. Even when people are told that the chance of recurrence is very low, it can still feel hard to believe this.

For many people, the cancer will not return, but the fear that it might is a normal reaction, with research suggesting around one to two thirds of people have anxious thoughts that their cancer could come back at some point.

It tends to be that in the early weeks and months after treatment finishes the fear of cancer returning is at its strongest and this fear naturally dissipates with time. Various things can trigger fear or worry about recurrence, for example a new pain or physical symptom, hearing about someone else’s cancer returning, at an anniversary of diagnosis or treatment, at the time of a scan or test.

In addition to the general tips about managing your Emotional and Psychological Wellbeing and Anxiety, it may be helpful to consider the following specific tips for managing fear of recurrence:

• Remember that it is normal to experience fear of recurrence after cancer treatment finishes. Try to allow yourself some space and time to feel this anxiety, and remember that it will likely improve with time
• With time after treatment, you get to know and learn more about how your body works now, which can help you to better understand different sensations in your body
• Speak to your medical team about your worries. You can ask what specific signs or symptoms you should watch out for and what you can do to minimise your future risk of recurrence
• Be aware of what triggers your fear of recurrence, for example is it a specific type of pain, when tests are due or at an anniversary. Think about what can help you at these times
• Talk to friends and family about how you are feeling and your worries. It can also be helpful for some people to be part of a peer support group or network where others may understand or feel similarly to you
• Engaging in relaxation, mindfulness and breathing exercises can help with feelings of anxiety and help you live more in the present moment instead of worrying about the future. Information on mindfulness can be found on the NHS website. Relaxation and breathing exercises are available through Maggie’s website.
• Focus on what you can control in your life. Remember you cannot control everything, but there are things in your daily life you may be able to take control of
• Engaging in activities that bring meaning and value to your life
• If anxiety or worry about recurrence is taking over your day, you could try setting a daily “worry time” to see if this helps. The idea is to postpone your worries or concerns to a specific time each day where you then go through them, to allow more time in your day to focus on other things. NHS Mind matters have a helpful video on tackling your worries. Some people find this strategy helpful, but others find this it difficult, so see if it works for you.

Resources

Fear of cancer returning | Maggie’s

Coping with worries about cancer coming back | Macmillan Cancer Support

Worrying about cancer coming back (Macmillan booklet)

Further support

It is natural to experience fear of recurrence after cancer treatment finishes, and often things will improve over time. However, if you are struggling and the tips on this page do not help then please do reach out for help.

Peer support:

Peer support can often be helpful, especially when people feel alone in their experience. There are a range of support groups available, for more information please see the Support Groups page.

Psychological therapy:

Psychological therapy can be useful and usually involves meeting with someone one to one or in a group. Therapists may use a variety of techniques to support you including (but not limited to) ideas from cognitive behavioural therapy, acceptance and commitment therapy and compassion focused therapy.

You can ask your cancer team for a referral to the Macmillan Cancer Psychological Support Team (CaPS) at St George’s Hospital if you are a patient under their care and had your treatment within the past 2 years. Alternatively, you can speak to your GP about psychological therapy available, including your local Talking Therapies service.

You can find information about the CaPS team here

You can find your local talking therapies service here

Support from cancer charities:

Maggie’s Centres offer a range of psychological support including support groups, drop-in services, workshops and courses, and one to one psychological therapy: Our centres | Maggie’s. You can either drop in, email or call them.

Macmillan offer a free support line on 0808 808 00 00, or you can email them for support: Emotional, financial and physical help for people with cancer | Macmillan Cancer Support

Community Mental Health Teams:

If you are already receiving support for your mental health, tell your team or therapist about how you are struggling now that cancer treatment has finished. For more information on this you can go to Community Mental Health webpage.

GP

You can speak to your GP about your anxiety regarding fear of recurrence. They may be able to support you in thinking about onward referrals or medication.

Thoughts of harming yourself or ending your life

For some people when they are facing a difficult time, they can have thoughts of harming themselves or ending their life. If you ever experience this, please seek immediate support via the Samaritans (116 123) for someone to talk with, ask for an emergency GP appointment, call 111 who can connect you with your local 24-hour mental health crisis team, or visit A&E.  You are not alone.