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After treatment and remission

How a relapse may show itself

A relapse often shows itself with signs similar to those at the first diagnosis, and sometimes only through changes in test results. This topic calmly explains which signs are possible — most of them can also have other, simpler causes.

Last updated: ~3 min read
A room with a slightly dimmer lamp.
Figure 1.A possible sign: tiredness and paleness.

01Short answer

If a relapse happens, the signs are usually linked to a fall in normal blood cells in the bone marrow. When red cells fall — anaemia: ongoing tiredness, paleness, breathlessness and a pounding heart. When platelets fall — bruising easily, tiny red or purple spots on the skin (petechiae), and nose or gum bleeding. When normal white cells fall — frequent or long-lasting infections and fever without a clear cause. Other possible signs: bone or joint pain (limping in children), swollen lymph nodes, a feeling of fullness or pain in the abdomen (an enlarged spleen or liver), night sweats, unexplained weight loss and poor appetite. With a central nervous system relapse there may be headache, vomiting, changes in vision, weakness of the face muscles or changes in behaviour. In boys who had ALL, painless swelling of one testicle needs attention. Sometimes there are no signs at all and the relapse is found on a routine blood test or MRD test (topic “Monitoring with the CBC”); in CML this is a rising BCR-ABL level. That is why it is important not to miss check-ups. Important: most of these signs are caused by an ordinary cold, a virus, tiredness or other things. One sign does not mean a relapse. But if a sign persists, keeps coming back or seems unusual to you, tell your doctor (topic “Which changes to report”). Worry is normal too — fear can rise with every new symptom (topic “Fear on test day”).

02Simple explanation

Signs often resemble the first diagnosis.

Anaemia, bruising, infections: falling blood cells.

Sometimes only a change in test results.

Most signs have other causes.

If a sign persists, tell your doctor.

03Scientific explanation

Signs: according to the NCI PDQ, signs of leukaemia — tiredness, paleness, bruising, bleeding, fever and bone pain — come from a fall in normal blood cells and can also appear at relapse.

Detection: the ACS notes that recurrence is sometimes found on routine check-ups and tests before symptoms appear.

Central nervous system: the NCI PDQ describes headache, vomiting and neurological signs in CNS relapse.

Follow-up: the ACS recommends reporting new symptoms to the doctor promptly after childhood leukaemia.

04What happens in the body?

Signs of anaemia

Ongoing tiredness, paleness, breathlessness and a pounding heart. These can also have ordinary causes.

Bleeding and bruising

Bruising easily, tiny spots, and nose or gum bleeding — may be linked to low platelets.

Violet petals on a pale surface.
Figure 2.A possible sign: easy bruising.

Infections and fever

Frequent or long-lasting infections and fever without a clear cause.

Other signs

Bone pain, swollen lymph nodes, abdominal fullness, night sweats and weight loss; headache and vomiting; a swollen testicle.

Only in test results

Sometimes there are no symptoms: the change shows on a blood test, MRD or BCR-ABL test.

A chart with one rising point.
Figure 3.A change in a blood test.

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.

05If you notice a sign

Steps.

Notice — Notice changes.1NoticeNotice changes.
Compare — Compare with usual.2CompareCompare with usual.
Note — Write it down.3NoteWrite it down.
Tell — Tell the team.4TellTell the team.
AttentionThe change is noticed in time.
CheckingThe doctor looks for the cause.
CalmMost often the cause is simple.

06Possible signs and their cause (simplified)

SignPossible cause
Tiredness, palenessFewer red cells
Bruising, bleedingFewer platelets
Fever, infectionsFewer normal white cells
Bone painChanges in the bone marrow
Headache, vomitingCentral nervous system

* Most of these signs also have other, simpler causes; the doctor makes the assessment.

07Key terms

Anaemia
Too few red cells.
Thrombocytopenia
Too few platelets.
Petechiae
Tiny pinpoint bleeds in the skin.
Lymph node
A small organ of the immune system.
MRD
Measurable residual disease.
Spleen
An organ on the left side of the abdomen.

08Key points

  • Know your usual state.
  • Write down changes.
  • Tell your doctor about a sign that persists.
  • Don’t miss check-ups.
  • For urgent signs, 103/112.
  • One sign is not a relapse.

09Frequently asked questions

Should I worry every time I feel tired?

No; tell your doctor about tiredness that lasts or gets worse.

My child has lots of bruises.

Children fall often, but many bruises without a cause should be shown to the doctor.

If my tests are normal, can I relax?

Normal tests are a very good sign; keep up follow-up.

The fear won’t go away.

Talk about it (topic “Fear on test day”).

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. Should I worry every time I feel tired?

  2. My child has lots of bruises.

  3. If my tests are normal, can I relax?

  4. The fear won’t go away.

  5. Does this information replace medical advice?

My questions

12Sources

  1. National Cancer Institute. Recurrent Cancer: When Cancer Comes Back
  2. American Cancer Society. Cancer Recurrence
  3. National Cancer Institute. Childhood Acute Lymphoblastic Leukemia Treatment (PDQ®)
  4. National Cancer Institute. Adult Acute Myeloid Leukemia Treatment (PDQ®)
  5. American Cancer Society. Follow-up Care After Treatment for Childhood Leukemia
  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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