Fear of cancer returning

After being diagnosed with cancer, you might have been focused on getting through your treatment. It can be strange when treatment ends, as you have less contact with your care team. You also won’t have the same routine and might not have the same support around you as you did before. 

We often hear from young people that this can be a very difficult time, particularly for your mental health. One of the ways this can impact you is feeling anxious about your health. It’s common to worry that aches and pains are a sign of relapse or recurrence (cancer coming back). It can be difficult to know what’s something to be worried about and what isn’t.   

Fear of cancer returning (FCR) is the fear, worry or concern about cancer coming back. It’s really common and lots of people who have had cancer experience these worries from time to time. For some people, the fear of cancer returning can have a big impact on their mood, relationships with friends and family, and also affect how they make plans for the future.   

There are a number of things that can keep fear of cancer returning on your mind and they often work in combination with each other. You can see some examples below:   

Rumination   

Rumination is a type of thinking where you might find you’re thinking about a particular topic a lot. It can feels like your thoughts are ‘stuck on a loop’. You might find yourself ruminating on your worries about your cancer coming back.    

Looking out for signs of danger   

Some people describe this as like having a radar that is always on, picking up information and looking for potential signs of cancer coming back. It might be difficult to ignore this and it might make you worry about things that you wouldn’t have worried about before you had cancer.     

Focusing on yourself 

Fear of cancer returning might be made worse if you’re often very aware of your bodily sensations and thoughts.     

Pushing scary thoughts away   

This is where you might try to control, avoid or push away thoughts about your cancer potentially coming back.     

Information from healthcare professionals   

A lack of information about how you can best monitor your health and stay healthy after a cancer diagnosis can keep FCR going.    

There are also certain things that might make you more worried about your cancer coming back, for example if someone you know has died from cancer or if you’ve experienced stressful or traumatic events in the past.   

Everyone has a different experience of cancer and life after cancer. There’s never any right or wrong way to feel, and however you feel is valid.  

We know from speaking to other young people who have had cancer that adapting to life after the end of treatment is difficult.  

Some people find that their values change, they become more aware of what is important to them, or they stop doing things that they used to enjoy doing. It’s important to think about what’s important to you and what you want to spend your time doing.  

If you’re worried about how much the fear of cancer returning is impacting your life there are some tools you can use to try and minimise this. These techniques won’t necessarily work for everyone, it’s best to try each of them a couple of times to see how you get on. This way you can figure out which ones work best for you and how you want to use them. We’ve included some below that you might find helpful but if they don’t work for you it’s worth speaking to your care team to see if they have other suggestions.  

It’s best to try these techniques out when you’re feeling calm initially so you can understand how they work and what you need to do. This means you’ll be better able to use them when you’re feeling anxious. 

Using these techniques can help regulate your breathing and heart rate. This will help calm down your nervous system and reduce stress.  

The key to most breathing techniques is making sure your out breath (exhale) is longer than your in breath (inhale). So, if you breathe in for 5 seconds, you should breathe out for 7 seconds.  

If your out breath is slower then it can help your nervous system with the fight or flight response, and can also help rebalance oxygen levels.  

Box breathing 

To try this technique you need to imagine you’re drawing a box with your finger. Follow the instructions below to try this:  

Breathe in while you count 1, 2, 3 and draw the top line. 

Pause  

Breathe out while you count 1, 2, 3 and draw the right-hand side line. 

Pause  

Breathe in while you count 1, 2, 3 and draw the bottom line. 

Pause 

Breathe out while you count 1, 2, 3 and draw the left-hand side line. 

You can try do this in different ways, with different lengths of time to test what works best for you. You might find it easier to do shorter/longer in and out breaths.  

For this exercise make sure your hands are in a position that feels comfortable for you, this might mean holding them up in front of you or having them in your lap. 

Starting at the bottom of your thumb, use the first finger (index finger) on your opposite hand to trace up the outline of your thumb while you breathe in. When you get to the top of your thumb breathe out as your trace back down the other side of your thumb.  

You can then move to the next finger and do the same with the rest of your hand as many times as you need. 

This one isn’t just about breathing but also focusing on the feeling of tracing your fingers which can help you focus on something else and re-centre yourself.  

You can find yourself worrying about things at any time or place. It can get in the way of your day-to-day life and a lot of the time you might not even know what’s triggered it.  

A strategy that can help is to postpone your worry to a particular ‘worry time’. By learning to postpone your worry, it can be less intrusive, and you’ll be able to manage the feeling more effectively.  

Here are some tips for ‘worry time’, make sure you practice these techniques a few times, it can take time to put these strategies in place.  

Step 1: Create a worry time and space  

• Choose a particular time and place for your ‘worry time’. Set yourself a maximum amount of time as well, try not to make it any longer than 20 minutes 
• Ideally find somewhere that you feel comfortable and that is distraction free. It shouldn’t be somewhere you use regularly like your bed or sofa  
• Make sure you’re not doing your ‘worry time’ too close to bedtime – it should be at least two hours before 

Step 2: Postpone your worry 

• As you notice worries throughout the day, catch them and stop and tell yourself you’ll postpone thinking about it to your ‘worry time’ 
• If you find it helpful, you can write your worry down on your phone, sticky notes or even voice record it  
• Remind yourself that you will have time to think about it later and there’s no need to worry about it now 
• Try to focus on the present and what you’ll be spending the day doing to help let go of the worry. Decide on something else you can do right now, it could be practical, fun, active or comforting 

Step 3: Come back to your worries at ‘worry time’ 

• When your worry time arrives, take some time to think about the worries you had during the day 
• Only use this time to focus on the worries that are still concerning you  
• Some of the worries you had during the day might not bother you anymore, in which case you don’t need to do anything! 
• If you feel like you still need to worry about some of them try not to spend any longer than your set amount of time doing so 
• You might find it helps to write your thoughts and a solution down rather than worrying in your head – do this in whatever way feels best for you 

You might find that some sensory techniques will help you. Sensory means things that affect any of your five senses: touch, taste, sound, smell, and sight. 

Taste 

Eating a strong mint or a sour sweet when your feeling very overwhelmed or anxious can help shift your mind from your thoughts and help you focus on something else, bringing you back into the moment.  

Sound 

If there is a particular type of music that you find soothing try playing it when you’re finding anxious thoughts are popping up. It can help calm your thoughts and reduce cortisol – the stress hormone.  

Touch 

People who experience panic attacks can find this really useful – holding an ice cube or having an ice pack in your hand or against your neck can help ground you and bring you back to the moment. This is because it focuses your mind back on the sensations in your body – similar to eating strong mints or sour sweets.  

If you’re feeling anxious you might also notice that you get restless. This might mean you find yourself tapping your legs or doing other small movements. If you use a stress ball or a fidget toy then you can focus these movements and give them a specific outlet which might help you distract yourself from your environment.  

Smell 

Certain smells can often remind you of a happy memory or make you feel good. Essential oils can be another useful tool. Try out some different scents and find one that you like. Put some on a tissue and carry it with you, when you notice you’re feeling anxious, allow yourself to sit with the anxiety and use the scent to ground yourself back in the moment. 

Grounding techniques can be a really useful way to bring yourself back into the moment if you’re feeling overwhelmed. Distracting yourself from your anxious thoughts and bodily sensations can also help bring down your anxiety levels. 

You can try out some of the techniques below and see what works best for you.  

Categories 

Give yourself a category (like food, countries, celebrities) and then in your head try and name one for each letter of the alphabet. For example: apple, banana, cherry etc.  

Spelling 

Think about your name and try to spell it backwards. Once you’ve done yours you can try other people you know and their names.  

Counting 

If you prefer numbers to letters this one might be good for you. Starting at 100, count backwards in groups of another number, like 7. For example, 100, 93, 86, 79 etc.   

54321 

This one uses your senses again. Look around you and try to list the following:  

• Five things you can see 
• Four things you can hear 
• Three things you can feel 
• Two things you can smell 
• One thing you can taste