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Fear of Relapse

If cancer returns following treatment and after a period of time when the cancer is not detectable, this is known as 'cancer recurrence' or relapse.

Many people are relieved to complete their treatment but this can also be a time when concern about the uncertainty of the future and a fear of cancer recurrence is common.

Fear of cancer recurrence is a feeling of dread that the cancer will come back or progress in the same or in different part of the body. It involves feeling worried, anxious or fearful that the cancer may return.

This is a normal fear, especially in the first few years after treatment. An estimated 40-70% of people experience a significant fear of recurrence and although their levels of fear may be low-moderate, it is one of the main concerns and one the greatest areas of unmet needs for people diagnosed with cancer.

This fear of recurrence also is a significant concern for family members.

It can be reassuring to know that fear of recurrence tends to reduce over time, but may still be present in the back of your mind years after treatment.

It is normal to worry more about recurrence at specific times and knowing when your fear may be the strongest can help. Times that can be more difficult than others include (but are not limited to):

  • before follow-up medical appointments;
  • when medical procedures are scheduled;
  • anniversaries (e.g., date of diagnosis, chemotherapy, transplant or end of treatment);
  • special occasions (e.g., birthdays or holidays);
  • when experiencing symptoms similar to those when first diagnosed;
  • experiencing side-effects of treatment;
  • illness of family members;
  • hearing of others diagnosed with cancer;
  • death of a family member/friend from cancer/another illness;
  • passing the hospital where you were treated or visiting someone in that hospital;
  • media reports about cancer or new treatments;
  • advertisements or fundraising campaigns related to cancer.

A fear of recurrence can be beneficial as it may motivate you to:

  • become better informed about your health;
  • seek needed support;
  • make and keep follow-up health care appointments; and
  • change diet and exercise patterns.

If you experience fear of recurrence and begin noticing some of the following signs, this may indicate your fear is becoming a problem and you should seek assistance:

  • being unwilling to return to a full life because of fear;
  • having recurrence as a constant pre-occupation or worry;
  • thinking about recurrence first thing in the morning and last thing at night;
  • inability to concentrate;
  • minor health problems raise a strong fear that the cancer has returned;
  • long-term sleep problems;
  • reduced/no appetite that lasts for days; and
  • reduced desire to spend time with friends or participate in pleasurable activities.

If your fear of recurrence is affecting you, please advise your medical team and/or contact the Leukaemia Foundation for assistance.