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After treatment and remission

Follow-up plan

When active treatment ends, a new stage begins — follow-up. This topic explains what a good follow-up plan includes, how to get one and how to use it.

Last updated: ~2 min read
A long road with glowing milestones across a dark landscape.
Figure 1.A follow-up plan is a roadmap for the years ahead.

01Short answer

A follow-up plan (also called a survivorship care plan) is a written document showing which tests and checks are done after treatment, when and by whom. ASCO and the NCI recommend giving it together with a short treatment summary. In leukaemia the plan usually includes: the blood test schedule, bone marrow and molecular tests when needed, checks for late effects based on the medicines received (heart, bones, hormones, second cancers), vaccinations, lifestyle and emotional support, and whom to call about worrying signs. The plan is updated over time and shared between the haematologist and the family doctor.

02Simple explanation

A follow-up plan is a written roadmap.

It answers what, when and who.

The plan covers your whole health.

Visits become less frequent over time.

The plan is updated.

03Scientific explanation

Content: the ASCO template includes a treatment summary, follow-up schedule, possible late effects and contact details.

Risk-based follow-up: the COG guidelines set checks according to the specific treatment received (medicine, dose, radiation, transplant).

Vaccinations: after a transplant or intensive chemotherapy, vaccinations are restored on your doctor’s schedule.

Coordination: the NCI notes that a plan helps keep care from being scattered between several doctors.

04What happens in the body?

What is the plan for?

After treatment there is a lot of information and it is hard to remember. The plan gathers it in one place: when to have tests, what to check and whom to contact.

What does the plan include?

The blood test schedule, bone marrow and molecular tests (when needed), heart and bone checks, hormones, skin and dental checks, vaccinations, emotional support and lifestyle advice.

The plan covers the heart, bones and blood
Figure 2.The plan covers the heart, bones and blood.

A personal plan

The plan fits your type of leukaemia and the treatment you had. After anthracyclines the heart needs special attention, after steroids the bones, and after a transplant vaccinations and graft-versus-host disease.

Who does what?

The plan shows the roles of the haematologist and the family doctor. Over time part of follow-up may move to the family doctor, but the link remains.

Two clear folders passing a stream of light between them.
Figure 3.The plan is shared between doctors.

Updating the plan

New results, symptoms or life changes (pregnancy, a new job) can change the plan. It helps to review it together once a year.

How to get a plan

At the end of treatment, ask your doctor for a written plan and a treatment summary (“Treatment summary”). If the clinic has no such form, write down the key points together.

05From the end of treatment into the years

The steps of a follow-up plan.

End of treatment — The plan is made when treatment ends.1End of treatmentThe plan is made when treatment ends.
List — Tests and checks are written down.2ListTests and checks are written down.
Schedule — Visits become less frequent.3ScheduleVisits become less frequent.
Update — The plan is updated as needed.4UpdateThe plan is updated as needed.
ClarityWhat and when are clear.
Complete careLate effects are not forgotten.
ConnectionDoctors work from one plan.

06Example sections of a follow-up plan (simplified)

SectionWhat it includesWho
BloodBlood count scheduleHaematologist
LeukaemiaMarrow, molecular testsHaematologist
HeartEchocardiogram (when needed)Haematologist / cardiologist
BonesDXA (when needed)Doctor
VaccinationsCatch-up scheduleHaematologist / family doctor
EmotionalSupport, counsellingPsychologist

* Every plan is individual.

07Key terms

Follow-up plan
A written schedule of care after treatment.
Treatment summary
A short overview of the treatment received.
Late effect
An effect that appears after treatment.
Risk-based follow-up
Choosing checks according to the treatment received.
Coordination
Doctors working together.
Family doctor
The primary care doctor.

08Key points

  • The plan is a written roadmap.
  • It covers your whole health.
  • The plan is personal.
  • Roles are made clear.
  • Review it once a year.
  • Ask for it in writing.

09Frequently asked questions

My clinic has no plan form. What should I do?

Write down the key points with your doctor: tests, dates and a contact number.

How far ahead is the plan made?

Usually in detail for the first years and in general terms after that.

Should I show the plan to other doctors?

Yes, especially your family doctor and dentist.

Can the plan change?

Yes, with new results or symptoms.

I was treated as a child. Do I need a plan too?

Yes, guidelines such as COG recommend lifelong follow-up.

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. My clinic has no plan form. What should I do?

  2. How far ahead is the plan made?

  3. Should I show the plan to other doctors?

  4. Can the plan change?

  5. I was treated as a child. Do I need a plan too?

My questions

12Sources

  1. Cancer.Net (ASCO). ASCO Cancer Treatment and Survivorship Care Plans
  2. Cancer.Net (ASCO). Follow-Up Care After Cancer Treatment
  3. National Cancer Institute (NCI). Follow-Up Medical Care
  4. National Cancer Institute (NCI). Cancer Survivorship
  5. Children's Oncology Group. Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers
  6. Leukemia & Lymphoma Society (LLS). Long-Term and Late Effects of Treatment
  7. American Cancer Society. Living as an Acute Myeloid Leukemia (AML) Survivor
  8. MedlinePlus (U.S. National Library of Medicine). Immunization
  9. National Cancer Institute. Facing Forward: Life After Cancer Treatment
  10. Cancer.Net (ASCO). Long-Term Side Effects of Cancer Treatment
Medical disclaimerThis information is for educational purposes only and does not replace medical advice.
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