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After treatment and remission

Late effects are individual

Two people treated for the same leukaemia can have completely different late effects. This topic explains why and why a personal follow-up plan matters.

Last updated: ~3 min read
Constellations, each with its own pattern.
Figure 1.Everyone’s late effects are their own.

01Short answer

Late effects are changes that appear months or years after treatment. Whether they happen, and how severe they are, differs from person to person. Several factors play a part. The treatment itself: which medicines and at what total dose, whether there was radiation and to which area, whether there was a transplant, and what complications occurred. Age at treatment: in young children developing organs are more sensitive, while in older people existing heart and other conditions matter. Genetic differences: some people’s bodies break down medicines differently or are more sensitive to certain effects. Sex, previous health and lifestyle (tobacco, physical activity, diet) also change the risk. That is why two people with the same diagnosis have different follow-up plans. The COG and other guidelines assess risk based on the treatment summary: people at high risk get more frequent and more detailed checks, people at low risk a simple yearly check. The plan is updated over time — as new information emerges, with age and as health changes.

02Simple explanation

Late effects differ for everyone.

Factors: treatment, dose, radiation, transplant.

Also: age, genetics, health, lifestyle.

So the plan is personal.

The plan is updated over time.

03Scientific explanation

Treatment-based risk: the COG guidelines set follow-up not by diagnosis but by the specific treatment received (medicines, total doses, radiation site and dose).

Age: according to the NCI, treatment at a young age raises the risk of effects on growth, the brain and hormones; in older people heart and blood vessel effects matter more.

Genetics: the NCI notes that some inherited differences can change sensitivity to side effects of certain medicines (such as anthracyclines); research is ongoing.

Lifestyle: the ACS stresses that not smoking, physical activity and a healthy weight can lower the risk of many late effects.

04What happens in the body?

Why do they differ?

Everyone receives their own treatment and the body reacts in its own way. Even on the same protocol, doses, complications and age differ.

Which factors matter?

Medicines and their total doses, radiation, transplant, age at treatment, sex, genetic differences, previous illnesses and lifestyle.

A balance with different shapes on each side.
Figure 2.Many factors shape risk.

How is risk assessed?

Your doctor looks at your treatment summary and uses guidelines to decide which organs are at risk.

A personal follow-up plan

With high risk, more frequent specific tests; with low risk, a simple yearly check. The plan is written for you.

A map with one highlighted path.
Figure 3.A personal follow-up plan.

Does the plan change?

Yes. As you get older, if new signs appear or new research emerges, your doctor updates the plan.

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.

05A personal approach

Steps.

List — Write down your treatment.1ListWrite down your treatment.
Discuss — Discuss your risk with your doctor.2DiscussDiscuss your risk with your doctor.
Plan — A personal follow-up calendar.3PlanA personal follow-up calendar.
Update — Update the plan over time.4UpdateUpdate the plan over time.
IndividualityYour risk is your own.
PlanThe plan is for you.
Peace of mindLess unnecessary worry.

06Factors that shape late effects (simplified)

FactorExampleWhy it matters
Medicine and doseTotal anthracycline doseHeart risk
RadiationHead, whole bodyHormones, second cancer
AgeYoung child or older adultOrgan sensitivity
GeneticsInherited differencesSensitivity to medicines
LifestyleTobacco, activityRaises or lowers risk

* Your doctor assesses your risk.

07Key terms

Late effect
An effect that appears after treatment.
Total dose
The amount of a medicine given over the whole treatment.
Risk-based follow-up
Checks chosen according to risk.
Treatment summary
A written record of your treatment.
Protocol
The planned scheme of treatment.
Genetic sensitivity
A different reaction for inherited reasons.

08Key points

  • Late effects are individual.
  • Do not compare yourself with others.
  • Know your treatment summary.
  • Follow your own plan.
  • Lifestyle changes risk.
  • Keep the plan up to date.

09Frequently asked questions

A friend developed heart problems — will I?

Not necessarily; your risk depends on your own treatment.

If my risk is low, do I still need checks?

Yes, but a simple yearly check is usually enough.

Can a genetic test show my risk?

In some cases; it is not yet standard — ask your doctor.

When does the plan change?

With age, new signs or new guidelines.

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. A friend developed heart problems — will I?

  2. If my risk is low, do I still need checks?

  3. Can a genetic test show my risk?

  4. When does the plan change?

  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 (NCI). Late Effects of Treatment for Childhood Cancer (PDQ®)–Patient Version
  3. National Cancer Institute. Late Effects of Treatment for Childhood Cancer (PDQ®)
  4. American Cancer Society. Late Effects of Childhood Cancer Treatment
  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. American Cancer Society. Life After Cancer: When Cancer Treatment Ends
Medical disclaimerThis information is for educational purposes only and does not replace medical advice.
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