Follow-up visits and tests
The last day of treatment is a big celebration, but contact with your doctor does not end there. Follow-up visits are there to make sure the leukemia has not come back, to spot late effects of treatment early and to protect your overall health. This topic explains what happens at follow-up visits, how often they take place, which tests are done and how to prepare for them.
01Short answer
02Simple explanation
Even after treatment ends, your doctor will keep a close eye on you for a while. This has three aims: to check that the leukemia has not come back, to spot late effects of treatment and to protect your overall health.
Early on, visits are frequent, because in acute leukemias relapse most often happens in the first years. Over time, as results stay good, appointments become less frequent.
Every visit is built on a conversation, an examination and a blood test. A bone marrow test and an MRD test are not done every time, only as planned or when needed.
In chronic myeloid leukemia, medication often continues, and the main check is measuring the BCR::ABL1 level in the blood. In chronic lymphocytic leukemia, regular check-ups and blood tests are done.
A treatment summary and care plan are your “map”: they show which medicines you received, which checks are needed and when, and which signs mean you should call.
03Scientific explanation
How often: according to the American Cancer Society, after AML and ALL follow-up visits are about once a month at first, then less often, and continue for at least several years. If AML comes back, it most often happens within the first few years; it is unusual for ALL to return if there are no signs of it 5 years after treatment.
Molecular monitoring: the 2021 ELN consensus describes regular MRD monitoring for the first two years after treatment in forms of AML that can be followed by PCR (for example NPM1). According to the 2020 ELN recommendations, in CML the BCR::ABL1 level is usually measured every 3 months, and somewhat less often once a deep response is stable. The 2018 iwCLL criteria describe follow-up in CLL with regular examinations and blood tests.
Heart and other organs: the 2022 ESC cardio-oncology guidelines recommend that people treated with anthracyclines (for example daunorubicin, idarubicin) have a heart check by echocardiography at the end of treatment and within the first year, and then follow-up according to their level of risk. The 2023 international recommendations for long-term survivors of transplant and cellular therapy give a broad list of checks, including lungs, thyroid, bones, eyes, skin, mouth, mental health and vaccinations.
People treated in childhood and youth: the Children’s Oncology Group long-term follow-up guidelines describe a lifelong personal screening plan based on the specific treatment received (medicines, radiotherapy, transplant). The NCI and the American Cancer Society advise that everyone who finishes treatment should receive a treatment summary and a follow-up care plan.
04What happens in the body?
What happens at a visit?
The doctor asks how you feel and about tiredness, pain, infections, appetite, sleep and mood. Then comes a physical examination (lymph nodes, liver, spleen, skin) and a blood sample. Results are usually discussed the same day or a few days later. Mention anything that worries you, even if it seems small.
Blood tests and special tests
A full blood count shows the recovery of healthy cells and any signs of leukemia; chemistry tests check the liver, kidneys and other organs. According to plan, bone marrow, MRD or BCR::ABL1 tests may be done. An unexpected result does not always mean relapse: it is often explained by an infection or a medicine, and the test is repeated.
Treatment summary and care plan
Ask your doctor for a written treatment summary: diagnosis, the medicines you received, any radiotherapy or transplant, and complications. The care plan shows which checks are needed and when, which late effects to watch for and who is responsible for what. Share these documents with your family doctor too.
Between visits: when to call
Contact your team without waiting for the next appointment if you have fever, unexplained bruising or bleeding, bone pain, swollen lymph nodes, night sweats, unexplained weight loss or frequent infections. After a transplant, a new rash, diarrhea, dry eyes or mouth, or breathlessness are also important signals.
How to prepare for a visit
Write down your questions and symptoms in advance, and bring a list of all the medicines and supplements you take. Keep copies of your results in one folder. Feeling anxious before a visit is completely normal; bringing someone close to you means both support and a “second pair of ears”.
05How does follow-up change over time?
A typical path after acute leukemia (simplified; your schedule may differ).
06What may be checked during follow-up (simplified)
| Check | Why | Who usually needs it |
|---|---|---|
| Full blood count | Recovery of blood cells, signs of leukemia | Everyone |
| Blood chemistry | Liver, kidneys, sugar, fats | Everyone |
| Bone marrow / MRD | Residual or returning leukemia | As planned, especially in acute leukemias |
| BCR::ABL1 PCR | Following the molecular response | CML (and Ph-positive ALL) |
| Echocardiogram | Heart function | People who received anthracyclines |
| Thyroid, hormones, bone density | Endocrine and bone effects | After transplant, steroids or radiotherapy |
| Eye and skin checks | Cataracts, skin changes | After transplant or steroids |
| Vaccination status | Recovery of immunity | Especially after a transplant |
* This list is a general guide only. Your hematology team decides which checks you need and when.
07Key terms
- Follow-up
- Regular doctor visits and tests after treatment.
- Treatment summary
- A written overview of the diagnosis and all treatment received.
- Survivorship care plan
- A personal plan showing which checks are needed and when.
- Full blood count
- A count of red cells, white cells and platelets.
- BCR::ABL1
- The leukemia-specific fusion gene measured in CML.
- Echocardiogram
- An ultrasound scan of the heart.
- Anthracyclines
- A group of chemotherapy medicines that can affect the heart.
- Late effect
- A problem that appears months or years after treatment.
- Chronic GVHD
- The effect of donor immune cells on the body after an allogeneic transplant.
- Family doctor
- The primary care doctor who looks after your general health.
08Key points
- Follow-up is an important continuation of treatment.
- Visits are frequent at first, then less often.
- Every visit rests on a conversation, an examination and a blood test.
- Marrow, MRD and BCR::ABL1 tests are done as planned.
- Your heart, hormones, bones and eyes may also be checked.
- Ask for a treatment summary and a care plan.
- With new symptoms, do not wait for the next visit.
- Keep copies of your results.
09Frequently asked questions
How long will follow-up last?
It depends on the type of leukemia and the treatment received. In acute leukemias, close follow-up usually lasts several years, followed by long-term care focused on late effects. Some checks may be recommended for life.
Will bone marrow be taken at every visit?
No. A blood test is usually enough. A bone marrow test is done according to plan or if the blood test shows a suspicious change.
One of my results is outside the normal range. Should I worry?
A single change is often due to an infection, a medicine or another temporary cause. Your doctor will compare it with your earlier results and repeat the test if needed.
I am moving to another city or country. What should I do?
Take your treatment summary, latest results and care plan, and contact a new hematologist in advance. If possible, ask your old and new teams to speak to each other.
I get very anxious before visits. Is that normal?
Yes, it is a very common feeling. Breathing exercises, activities you enjoy and support from someone close all help. If anxiety gets in the way of daily life, talk to a psychologist.
My child has recovered from leukemia. Will follow-up be needed as an adult?
Yes. Some effects of treatment received in childhood can appear years later. A long-term follow-up clinic and a planned transition to adult care are very important.
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.
How often will follow-up visits be, and for how long?
Which tests will be done at each visit?
Which signs between visits mean I should call?
Can I have a written treatment summary and follow-up plan?
12Sources
- National Cancer Institute (NCI). Follow-Up Medical Care
- National Cancer Institute (NCI). Cancer Survivorship
- American Cancer Society. Living as an Acute Myeloid Leukemia Survivor
- American Cancer Society. Living as an Acute Lymphocytic Leukemia Survivor
- American Cancer Society. Living as a Chronic Myeloid Leukemia Survivor
- American Cancer Society. Survivorship Care Plans
- Cancer.Net (ASCO). Follow-Up Care After Cancer Treatment
- Children's Oncology Group. Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers
- Transplantation and Cellular Therapy, 2024. International Recommendations for Screening and Preventative Practices for Long-Term Survivors of Transplantation and Cellular Therapy: A 2023 Update
- Blood, 2021. 2021 Update on MRD in acute myeloid leukemia: a consensus document from the European LeukemiaNet MRD Working Party
- Leukemia, 2020. European LeukemiaNet 2020 recommendations for treating chronic myeloid leukemia
- Blood, 2018. iwCLL guidelines for diagnosis, indications for treatment, response assessment, and supportive management of CLL
- European Heart Journal, 2022. 2022 ESC Guidelines on cardio-oncology developed in collaboration with EHA, ESTRO and IC-OS