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After treatment and remission

A long-term guide for the family

Follow-up for people treated for leukaemia in childhood goes on for years, sometimes for life. This topic is a practical guide for families: documents, the follow-up plan, late effects, healthy habits and handing responsibility to the growing child.

Last updated: ~3 min read
A shelf with a thick folder.
Figure 1.The family’s treatment records.

01Short answer

Remission and the end of treatment are a big milestone (topic “Remission in a child”), but some people treated for cancer in childhood develop late effects years later. The COG and NCI recommend lifelong, risk-based follow-up. These are the main steps that make the journey easier. 1. The treatment summary: diagnosis, medicines and their total doses (especially anthracyclines), radiotherapy (site and dose), transplantation and complications. Ask your team for this document when treatment ends. 2. The follow-up plan: which check and when — for example the heart (echocardiography, topic “Why years later”), the thyroid (topic “Hormones”), growth and hormones (topic “Growth and hormones”), bones, eyes, hearing, learning and fertility (topic “Fertility after childhood treatment”). The doctor draws up the plan from the summary. 3. Healthy habits for the whole family: balanced eating, physical activity, staying away from cigarettes and vapes, sun protection and vaccinations (topics “Nutrition in remission”, “Weight”, “Getting active again”, “Facts about tobacco and alcohol”). 4. Emotional health: anxiety, stress or depression in the child, brothers and sisters, and parents can appear even years later; asking for help is normal. 5. Handing over responsibility: in adolescence the child should learn their medical history, summary and follow-up plan; as 18 approaches, the move to adult services is planned (topic “Teenagers”). 6. Working with the family doctor: give them a copy of the summary. Tell a doctor about new symptoms — even years later (topic “Which changes to report”).

02Simple explanation

Follow-up lasts years, sometimes for life.

The key document is the treatment summary.

A personal follow-up plan.

Healthy habits for the whole family.

Hand responsibility gradually to the child.

03Scientific explanation

Lifelong follow-up: COG guidelines recommend lifelong, risk-based follow-up for everyone treated for cancer in childhood, adolescence and young adulthood.

Late effects: according to the NCI PDQ, most survivors develop at least one late effect; most are mild, but some need regular monitoring.

Summary: the ACS regards the treatment summary and follow-up plan as the foundation of long-term care.

Follow-up: the NCI notes that regular follow-up helps find late effects early.

04What happens in the body?

The treatment summary

Diagnosis, medicines and doses, radiotherapy, transplant and complications. Ask your team for it when treatment ends.

The follow-up plan

Which check and when: heart, thyroid, growth, bones, eyes, hearing, learning and fertility.

A long road through the seasons.
Figure 2.Follow-up over the years.

Healthy habits

Food, movement, no cigarettes or vapes, sun protection and vaccinations — for everyone.

Emotional health

The child, brothers and sisters, and parents may need support even years later.

Handing over responsibility

The teenager learns their history and plan, then moves to adult services.

A lighthouse and a small house on the shore.
Figure 3.Steady guidance for the family.

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.

05Long-term care

Steps.

Summary — Treatment summary.1SummaryTreatment summary.
Plan — Follow-up plan.2PlanFollow-up plan.
Habits — Healthy habits.3HabitsHealthy habits.
Handover — Handing over.4HandoverHanding over.
DocumentsInformation is kept safe.
Follow-upChecks on time.
HealthThe family lives healthily.

06The family’s long-term checklist (simplified)

WhatWhen
Treatment summaryWhen treatment ends
Follow-up planUpdated every year
Heart, hormones and moreAccording to the plan
Emotional check-inAt every visit
Move to adult carePlanned in adolescence

* Your doctor sets the exact schedule from the treatment summary.

07Key terms

Treatment summary
A written overview of the treatment received.
Follow-up plan
A schedule of checks.
Late effect
A problem that appears years later.
Cumulative dose
The total amount of a medicine.
Transition
Moving to adult services.
Anthracycline
A group of medicines that can affect the heart.

08Key points

  • Ask for the treatment summary.
  • Keep copies.
  • Follow the follow-up plan.
  • Build healthy habits as a family.
  • Pay attention to emotions.
  • Hand over responsibility gradually.

09Frequently asked questions

How long does follow-up last?

Often for life, but checks become less frequent over time.

We weren’t given a summary.

Ask the centre where treatment took place.

A brother or sister is worried too.

Give them time and support as well.

We are moving abroad.

Give the summary and plan to the new doctor.

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. How long does follow-up last?

  2. We weren’t given a summary.

  3. A brother or sister is worried too.

  4. We are moving abroad.

  5. Does this information replace medical advice?

My questions

12Sources

  1. Children's Oncology Group. Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers
  2. National Cancer Institute. Late Effects of Treatment for Childhood Cancer (PDQ®)
  3. American Cancer Society. Late Effects of Childhood Cancer Treatment
  4. American Cancer Society. Follow-up Care After Treatment for Childhood Leukemia
  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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