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After treatment and remission

After childhood leukemia

Every year there are more survivors of childhood leukaemia, and most of them live healthy, full lives. This topic explains why childhood treatment needs to be followed for years, how follow-up is organised and how the move into adult life works.

Last updated: ~3 min read
A sapling and a tree from the same roots.
Figure 1.A child survivor grows into adulthood.

01Short answer

Today the great majority of childhood leukaemias, especially ALL, end in long-term remission. But because a child’s body is growing and developing, treatment can show some effects years later, sometimes in adulthood. These are called “late effects”: growth and hormones (topic “Growth and hormones”), fertility (topic “Fertility after childhood treatment”), the heart (after anthracyclines), the thyroid (topic “Thyroid”), bones, memory and attention (topic “Memory and attention”), teeth (topic “Teeth”) and second cancer risk (topic “Risk of a second cancer”). Not everyone has them; the risk depends on the medicines, radiation, transplant and age at treatment. The COG has written long-term follow-up guidelines used worldwide: each survivor gets a treatment summary and a personal follow-up plan, with a yearly check and risk-based tests. In the teenage years the young person starts learning their own history, then there is a planned move from the children’s clinic to an adult doctor. Follow-up continues for life, but is often a simple yearly check.

02Simple explanation

Most childhood leukaemias end in long-term remission.

In a growing body, late effects can appear years later.

The risk depends on treatment and age.

Key tools: treatment summary and follow-up plan.

A timely move to adult care.

03Scientific explanation

How common late effects are: according to the NCI, most childhood cancer survivors have at least one late effect, but most are mild and manageable.

Risk factors: the COG lists the total anthracycline dose, cranial and total body radiation, alkylating medicines, steroids and transplant as the main factors.

Follow-up plan: the COG guidelines recommend a personal yearly check and screening for each survivor, based on the treatment received.

Transition: the ACS notes that adult doctors do not always know the effects of childhood treatment, so a treatment summary and a planned transfer are important.

04What happens in the body?

Why follow up years later?

As a child grows, organs develop. Some effects of treatment only show during growth, puberty or ageing.

Which late effects can happen?

Growth and hormones, fertility, heart, thyroid, bones, memory and attention, teeth, and second cancer risk. Not everyone has them.

What is a treatment summary?

A short written record of the diagnosis, medicines and their total doses, radiation, transplant and complications. It is the basis of the follow-up plan.

A glowing folder with a gold ribbon.
Figure 2.The treatment summary goes into adult life.

How is follow-up done?

A yearly check, height and weight, blood pressure and risk-based tests (for example heart ultrasound, hormones, thyroid). Some checks are done every few years.

Moving into adult life

In the teenage years the young person learns their own history and starts asking their own questions. Then they move, as planned, to an adult doctor or a survivorship clinic.

A bridge of light between two buildings.
Figure 3.Moving from children’s to adult follow-up.

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.

05From childhood to adulthood

Steps.

Summary — Get a treatment summary.1SummaryGet a treatment summary.
Follow-up — A long-term follow-up clinic.2Follow-upA long-term follow-up clinic.
Learn — Learn your own story.3LearnLearn your own story.
Transfer — A planned move to adult care.4TransferA planned move to adult care.
KnowledgeYou know your story.
Follow-upThe plan continues.
HealthA full life.

06Follow-up after childhood treatment (simplified)

TreatmentPossible late effectFollow-up
AnthracyclinesHeartHeart ultrasound (by risk)
Cranial radiationGrowth, hormones, memoryGrowth, hormones, assessment
SteroidsBones, eyesBone density, eye check
Alkylating medicinesFertilityHormones, tests
TransplantSeveral organsPersonal plan

* Your doctor builds your personal plan.

07Key terms

Late effect
An effect that appears years after treatment.
Treatment summary
A written record of the treatment you had.
Follow-up plan
Which checks to have and when.
Anthracycline
A chemotherapy medicine that can affect the heart.
Transition
Moving from a children’s doctor to an adult doctor.
Survivorship clinic
A clinic for long-term follow-up.

08Key points

  • Most survivors live healthy lives.
  • Late effects can appear years later.
  • Keep your treatment summary.
  • Have a yearly check.
  • Tell new doctors your history.
  • Plan the transfer in advance.

09Frequently asked questions

I was treated as a child but have no records.

Ask the clinic where you were treated for a summary; your doctor can help.

I feel well — do I still need checks?

Yes; some late effects start without symptoms and are easier to manage when found early.

When should I move to an adult doctor?

Usually between 18 and 21; plan the timing with your doctor.

Does everyone get late effects?

No; the risk depends on treatment, and most are mild.

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 was treated as a child but have no records.

  2. I feel well — do I still need checks?

  3. When should I move to an adult doctor?

  4. Does everyone get late effects?

  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. National Cancer Institute (NCI). Late Effects of Treatment for Childhood Cancer (PDQ®)–Patient Version
  5. National Cancer Institute (NCI). Follow-Up Medical Care
  6. National Cancer Institute (NCI). Cancer Survivorship
  7. Cancer.Net (ASCO). Follow-Up Care After Cancer Treatment
  8. Leukemia & Lymphoma Society (LLS). Long-Term and Late Effects of Treatment
  9. National Cancer Institute. Facing Forward: Life After Cancer Treatment
  10. MedlinePlus (U.S. National Library of Medicine). Hair Loss
Medical disclaimerThis information is for educational purposes only and does not replace medical advice.
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