Fear of Return

A diagnosis of lymphoma or chronic lymphocytic leukaemia (CLL) can be a stressful and emotional experience. Often there is a chance that the lymphoma could return, and treatment will need to start again. The fear of lymphoma returning can cause many lymphoma survivors a great deal of worry and stress.
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Fear of cancer recurrence and scan anxiety fact sheet

What is fear of recurrence?

‘Fear of recurrence’ refers to the worry or fear that the cancer will return to its original site, or that a new cancer will develop elsewhere in the body. The fear can set in immediately after treatment ends and it most commonly peaks 2-5 years after treatment finishes. For most it is experienced intermittently, in extreme cases however it can intrude on thoughts and makes general functioning difficult. Some survivors of cancer describe this fear as a ‘dark cloud’ hovering over their life and dampening their ability to get excited about the future.

Many people who complete treatment for lymphoma or CLL are initially very aware of new symptoms. They often perceive every ache, pain or area of swelling in their body as signs the cancer has returned. This can go on for several months. Believing that everything is a sign the cancer has returned is not unusual. While this is very normal behaviour and often fades over time, it is encouraged that you see your GP or treating team for advice if you are very worried about any new symptoms. Keep in mind that your body may look, feel and behave differently than it did prior to treatment.

What is “Scanxiety”?

The phrase ‘scanxiety’ is often used among patients in survivorship. It relates to the anxiety and stress experienced before or after follow-up scans and blood tests. It is important to know that both ‘scanxiety’ and fear of recurrence are normal feelings after treatment. These feelings generally reduce in intensity over time.

Practical tips to manage fear of cancer recurrence

  • Discussing your fears and concerns with family members or friends who can understand your feelings
  • Talking to a counsellor, psychologist or spiritual care worker
  • Practising meditation and mindfulness techniques, especially in the days leading up to and immediately following scans and appointments
  • Exercising regularly and making generally healthy lifestyle choices
  • Continuing with current hobbies, or getting involved in new activities which challenge you and allow you to meet new people
  • Attending all your follow up appointments and if possible, bringing a support person with you.
  • It can be helpful to write a list of topics or concerns that you would like to discuss with your doctor and take them with you to your follow-up appointment.
  • Participating in regular cancer screening programs for breast, cervical and bowel cancer
  • Ask you medical team to have your follow up review as soon as possible after the scan so you do not wait too long for a follow up call
  • Minimising the use of the internet to research new symptoms or concerns

Will this fear ever go away?

It can also be helpful to know that many people report that fear of recurrence generally reduces over time as their confidence builds. If you feel that this is not the case for you, it is encouraged that you speak about this with your GP or treating team about what other options may be helpful for you.

Every person who receives a Lymphoma or CLL diagnosis has a unique physical and emotional experience. What may ease the stress and anxiety for one person may not work for the next. If you are struggling with significant levels of stress and anxiety at any stage in your experience, please don’t hesitate to reach out. The Lymphoma Nurse Support Line is available for additional support as needed, alternatively you can email Lymphoma nurses.

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