The recurring fear of recurrence

A snowy mountain against an orange sunrise

"Whatever your prognosis, whatever your hopes, whatever your personality, the second that you know that you have cancer your life changes irrevocably."

It seems to be a common experience that once cancer treatment finishes, the anxieties and fears around recurrence become heightened. We regularly see conversations about recurrence, or worries of recurrence, on the community and how much this can impact your wellbeing and mental health. It’s natural to worry about cancer coming back, and it’s something that our Community members support each other with here on the site.

"The fear of recurrence is troubling me, I realise whole heartedly I’m so lucky and I’m trying to be positive but I don’t want to ignore the impact of the treatment had on my well-being."
Community member

"I feel worse now (mentally) than I did when I was going through the treatment.  It’s taken over my normal sensible thoughts… Does anyone else feel like this?"
Community member

"You’re not alone with that feeling. I am struggling everyday worrying about recurrence. I finished treatment this time last year surgery, chemo and rads now letrozole. I worry about every little ache and pain, its torture.  Not sure how to change this, maybe it’s just a time thing."
Community member

With the worry of recurrence being something our members discuss regularly on the site, it’s important to highlight that there is lots of support available, and also provide reassurance that these fears are natural and very common.

Having been through cancer treatment, it’s not unusual to experience changes in your body, whether permanent or temporary. This can often lead to worry about signs or symptoms that you’ve not experienced before.

In an article produced by Working with Cancer called ‘After treatment finishes then what?’, Dr Harvey looks at the experience of being diagnosed with cancer, and how this can impact your ability to trust your body.

"One of the consequences of all this is that you may lose faith in your ability to recognise when something is wrong with your body. After all, you may not have been able to tell that you had cancer in the first place and your body is now significantly changed so that there is a whole set of new and unusual sensations to experience."

You can read the full article on Working with Cancer’s website.

Reading through conversations here on the Community, it seems that anxieties around recurrence are commonly heightened just after treatment ends. What’s more common, is that you are not alone.

"Although I had a different type of cancer I think anyone who's had any type of cancer can identify with your comments about having "doubts and worries or feel anxious and apprehensive". Our bodies have seriously let us down and it's natural to wonder if any slight pain, or in my case change in my skin, means that the cancer has returned. Over time I've learnt to recognise these worries for what they are and, although I don't think I'll every completely stop worrying, at least it's manageable."
Latchbrook, Pancreatic cancer forum

"In terms of it coming back we all live with this and know that recurrence is a possibility but we can let Cancer rule and ruin our lives or we can take what we know that there is no evidence of disease and learn to accommodate somehow that uncertainty. I think we become very conscious and aware of Cancer when we have it and been through the treatment."
GRANNY59, Breast cancer forum

"One day at a time is my motto. I'm a Christian and although I cry at times, I just thank God for the day I'm doing, go to bed and try to sleep, then start again the next day."
floss b, Breast cancer forum

"The fear of recurrence never leaves any of us but somehow we manage to put it  to the backs of our minds and keep it there for a while until something comes up that re-ignites the fear and you are not alone in this."
GRANNY59, Breast cancer forum

"Fear of recurrence is very real. Please don't beat yourself up about how you feel - I think if we were all to be honest, most of us here probably go through similar fears. Fear of recurrence had a nasty habit of creeping up and pouncing when we least expect it. It's important that we build up our coping strategies so that we can stop the negative thoughts taking up squatters rights in our headspace. You perhaps already have things you do that help you feel better. For me, those strategies include walking, knitting (when I'm concentrating on a pattern there's less room for the dark thoughts) and prayer. Lots of people find meditation helpful. Mindfulness techniques can also be very useful."
Fairycake, Life after cancer forum

What’s common in these posts is that this fear is natural, and it is something that’s important to acknowledge and ensure you’re supported with. Developing coping strategies can be helpful, and it can help you to feel more in control. Below, we’ve collated a few examples of things that may help you to manage your fears and anxieties around recurrence:

  • Talk to your doctor, or specialist nurse to understand what might be important to look out for
  • Have open conversations with your consultant, your GP and/or specialist nurse to understand how you can access support and reassurance
  • Talk to others about how you’re feeling, it’s natural to worry and it can help to share your worries and acknowledge them out loud
  • Do things you enjoy and that will help take your mind off your worries
  • Set short term goals and focus on the time immediately in front of you

If you’re worrying about recurrence, be sure to reach out for support. We’d also be keen to hear your experiences of managing fears around recurrence and tips you have for others who may be going through something similar. If you’d like to share your experience, you can do so by commenting below or by emailing us on community@macmillan.org.uk.

You may also find some of our previous blogs helpful to look at:

Remember, the Community is here for you 24/7, and it’s full of thousands of people who understand and who you can talk to.

Our Support Line is also available 7 days a week, 8am-8pm on freephone 0808 808 00 00. They’re also available via webchat and email.

"It is only afterwards, when you are on solid ground again, that you can look back with amazement and view what you have experienced and marvel at your courage." – Dr Harvey, After treatment finishes then what?

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