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After treatment and remission

Fear of relapse

Most survivors fear that the leukaemia might come back. This topic explains why this fear arises, when it may grow stronger and how to live with it.

Last updated: ~3 min read
A small cloud in a wide sky.
Figure 1.Fear is only one part of life.

01Short answer

Relapse is when leukaemia returns after remission. Fear of relapse is one of the most common feelings after treatment. Sometimes it stays as a quiet background; sometimes it grows at particular moments: before a follow-up check (topic “Fear on test day”), on the anniversary of the diagnosis, when a familiar symptom or pain appears (topic “Not every pain means illness”), or when you hear about someone else’s illness. For most people the fear lessens with time, especially as remission continues, because for many leukaemias the risk of relapse is higher in the first years and then falls. It may not be possible to get rid of the fear completely, but you can stop it from running your life. What helps: accurate information from your doctor about your own risk, knowing which signs to report, following your follow-up plan, sharing the fear with loved ones, setting aside a “worry time”, focusing on the present, healthy habits and support groups. If the fear is very strong and disturbs sleep and daily life, psychological help such as cognitive behavioural therapy works well.

02Simple explanation

Fear of relapse is very common.

It grows at certain moments.

It often lessens over time.

Help: information, a plan, sharing, the present.

If strong: psychological therapy.

03Scientific explanation

How common: according to ASCO, most survivors experience fear of recurrence, and it can continue for years after treatment.

Triggers: ASCO and the ACS name follow-up checks, anniversaries, new symptoms and news of other people’s illness as moments that heighten fear.

Time: the ACS notes that for many cancers the risk of recurrence is higher in the first years and falls over time; your doctor can explain your own risk.

Treatment: according to the NCI, cognitive behavioural therapy, mindfulness and support groups are effective in reducing fear of recurrence.

04What happens in the body?

Why does this fear arise?

Leukaemia suddenly changed your life. Body and mind try to protect you from it happening again.

When does it grow stronger?

Before a follow-up check, on anniversaries, when you feel a new pain or tiredness, and when you hear of someone else’s illness.

Information helps

Ask your doctor: what is my risk of relapse, which signs should I watch for, and how often will follow-up be?

“Turning down the volume”

Set aside 15–20 minutes a day as “worry time” and save worrying thoughts for then. Slow breathing, walks and things you enjoy bring your attention back to the present.

A round dial whose light grows quieter.
Figure 2.The volume of worry can be turned down.

Staying connected to life

Plans, relationships, goals and everyday joys help you live alongside the fear. Fear is only one part of your life.

A glowing anchor on the bed of calm water.
Figure 3.Stability amid uncertainty.

When to call your doctor

Worrying signs — fever, bleeding, new pain, breathlessness — should be reported to your doctor between visits too. Getting in touch early is always better than waiting.

05Living alongside fear

Steps.

Notice — When the fear grows.1NoticeWhen the fear grows.
Know — Which signs to report.2KnowWhich signs to report.
Limit — Set aside a short worry time.3LimitSet aside a short worry time.
Present — Focus on today.4PresentFocus on today.
PerspectiveThe fear gets smaller.
StabilityYou stay grounded.
LifePlans continue.

06Fear of relapse: what helps (simplified)

SituationWhat you can doWho helps
UncertaintyLearn your risk and the signsDoctor
Trigger momentsA plan, company, breathingYou, loved ones
Persistent thoughtsWorry time, mindfulnessPsychologist
Strong fearCognitive behavioural therapyPsychologist, psychiatrist

* If fear gets in the way of daily life, tell your doctor.

07Key terms

Relapse
Leukaemia returning after remission.
Remission
When signs of leukaemia have gone.
Trigger
An event that heightens fear.
Worry time
A short time set aside for worrying thoughts.
Cognitive behavioural therapy
A therapy that works with thoughts and habits.
Mindfulness
Focusing attention on the present moment.

08Key points

  • Fear of relapse is normal.
  • Learn your risk from your doctor.
  • Know which signs to report.
  • Share the fear.
  • Focus on the present.
  • Seek therapy if needed.

09Frequently asked questions

When will this fear go away?

For many people it lessens over time, especially as remission continues.

Does every pain mean relapse?

No; most pains have other causes (topic “Not every pain means illness”).

If I tell loved ones about my fear, will I worry them?

Sharing often brings relief to both sides.

Does a healthy lifestyle prevent relapse?

It is no guarantee, but it improves your overall health and how you feel.

Does this information replace medical advice?

No. This is general education; only your treating doctor can assess your situation.

10Questions for your doctor

Take these questions to your appointment. The ones you save are collected on the “My questions” page and stay on this device only.

  1. When will this fear go away?

  2. Does every pain mean relapse?

  3. If I tell loved ones about my fear, will I worry them?

  4. Does a healthy lifestyle prevent relapse?

  5. Does this information replace medical advice?

My questions

12Sources

  1. Cancer.Net (ASCO). Coping With Fear of Recurrence
  2. American Cancer Society. Cancer Recurrence
  3. National Cancer Institute. Feelings and Cancer
  4. National Cancer Institute. Anxiety and Distress (PDQ®)
  5. Cancer Research UK. Coping with cancer emotionally
  6. National Cancer Institute (NCI). Follow-Up Medical Care
  7. National Cancer Institute (NCI). Cancer Survivorship
  8. Cancer.Net (ASCO). Follow-Up Care After Cancer Treatment
  9. Leukemia & Lymphoma Society (LLS). Long-Term and Late Effects of Treatment
  10. National Cancer Institute. Facing Forward: Life After Cancer Treatment
Medical disclaimerThis information is for educational purposes only and does not replace medical advice.
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