OVERVIEW
‘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, but most commonly peaks 2-5 years after treatment finishes. For most people 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, dampening their ability to get excited about the future.
Many people who complete treatment for lymphoma or CLL are initially hypervigilant of new symptoms, aches, pains or areas of swelling in their body for several months, believing that these are signs the cancer has returned. 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.
The phrase ‘scanxiety’ is often used amongst patients in survivorship and 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 post treatment experiences and 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 you feel comfortable sharing with
- 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 also be helpful to write a list of topics or concerns that you would like to discuss with your doctor.
- 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 use of the internet to research new symptoms or concerns
- Becoming a part of the Facebook ‘Lymphoma Down Under’ support group and discussing how you’re feeling with others in Australia who may be feeling the same things.
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.
