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After treatment and remission

Not every pain means illness

After leukaemia, every new pain or bout of tiredness can cause fear. This topic explains how to tell ordinary body signals from changes you should report to your doctor, and how to live with this worry.

Last updated: ~3 min read
Paths of light leading away from one point.
Figure 1.One symptom can have many causes.

01Short answer

Someone who has had leukaemia listens to their body more closely. This is natural, but sometimes every mild ache, headache, cold or tiredness brings the thought “has it come back?”. In fact most people — whether or not they have been ill — regularly feel small aches and discomforts: muscle tension, a headache after poor sleep, joint pain after physical work, viral infections. Most of these go away on their own within a few days. Questions that help tell them apart: when did the symptom start, what might it be linked to (effort, sleep, a cold), is it getting better, staying the same or getting worse, and are there other signs? A general rule: if an ordinary symptom improves within a few days, there is usually no cause for concern; if it lasts more than two weeks, gets worse or comes with warning signs (fever, bruising, night sweats, weight loss), see your doctor. Work out with your doctor which signs matter for you — this gives both safety and peace of mind.

02Simple explanation

Listening closely to your body is natural.

Most pains have ordinary causes.

Many pass within a few days.

If it lasts over two weeks or worsens: see a doctor.

Know the warning signs in advance.

03Scientific explanation

Body attention: ASCO notes that fear of recurrence can make people read ordinary body sensations as signs of illness; this is very common.

Ordinary causes: the ACS stresses that most pain and tiredness in survivors is not linked to recurrence, but persistent or new symptoms should be reported.

Warning signs: the NCI recommends discussing with your doctor which signs should be reported straight away during follow-up.

Anxiety: according to the NCI, excessive attention to the body can be a sign of anxiety; cognitive behavioural therapy helps break the cycle.

04What happens in the body?

Why does every pain scare me?

Illness has shaken your trust in your body. For safety, the brain may treat every signal as an “alarm”.

Ordinary body signals

Muscle and joint pain, tension headaches, colds and tiredness after poor sleep happen to everyone.

Soft pulses of light on a body outline.
Figure 2.Ordinary body signals happen to everyone.

Questions that help

When did it start? What might it be linked to? Is it getting better or worse? Are there other signs?

Wait or call

If an ordinary symptom improves within a few days, you can wait. If it lasts more than two weeks, gets worse or comes with warning signs, call your doctor.

A level balance and an hourglass.
Figure 3.Balanced attention: watch without panic.

Breaking the worry cycle

Limit online symptom searching, note the symptom and tell your doctor, and breathe slowly. If the worry is very strong, a psychologist can help.

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.

05Balanced attention

Steps.

Pause — Breathe, do not rush.1PauseBreathe, do not rush.
Note — When it started and how it changes.2NoteWhen it started and how it changes.
Wait — Give an ordinary symptom time.3WaitGive an ordinary symptom time.
Call — Your doctor if it persists.4CallYour doctor if it persists.
BalanceCalm attention.
AlertnessImportant signs are not missed.
Peace of mindLess worry.

06Wait or see a doctor? (simplified)

SituationUsuallyWhat to do
Muscle ache after effortOrdinaryRest, wait a few days
A coldOrdinaryWatch; see a doctor if fever
Pain lasting over two weeksNeeds checkingSee your doctor
Bruising, night sweats, weight lossWarning signSee a doctor without waiting

* If in doubt, call your doctor.

07Key terms

Symptom
A change you feel in your body.
Warning sign
A sign that needs checking straight away.
Body attention
Constantly monitoring body sensations.
Relapse
Leukaemia returning.
Symptom diary
A record of symptoms.
Cognitive behavioural therapy
A therapy that works with thoughts and habits.

08Key points

  • Not every pain means illness.
  • Note the symptom.
  • Give an ordinary symptom a few days.
  • If it lasts over two weeks, see your doctor.
  • Know the warning signs.
  • Limit online searching.

09Frequently asked questions

I feel embarrassed to bother my doctor “for nothing”.

If you are worried, calling is fine; doctors understand.

My bones ache — is it relapse?

Most often not; but tell your doctor about pain that lasts or worsens.

Should I have blood tests for every cold?

Usually not; if there is fever or a warning sign, talk to your doctor.

How can I trust my body again?

Time, normal follow-up results and support rebuild that trust.

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. I feel embarrassed to bother my doctor “for nothing”.

  2. My bones ache — is it relapse?

  3. Should I have blood tests for every cold?

  4. How can I trust my body again?

  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. National Cancer Institute. Follow-Up Medical Care
  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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