After a new diagnosis
The first days after a leukemia diagnosis are full of new words, tests and decisions. This topic is a practical guide: what usually happens in the first weeks, which questions are worth asking, what to prepare in advance and when to get urgent help. We have a separate topic about feelings; here we focus on a step-by-step plan.
01Short answer
02Simple explanation
Nobody can take everything in right after hearing the diagnosis, and that is normal. The main question of the first days is: exactly which leukemia is it, and how soon does treatment need to start?
The type of leukemia and its genetic features are found through bone marrow tests, flow cytometry, cytogenetic and molecular tests. Some results are ready within a few days, others take longer. Each result is one piece of the puzzle.
Before treatment, your general health is checked too: the heart, liver and kidneys, and some infections (such as hepatitis). This is needed to choose treatment safely.
Some things are important to discuss before treatment starts: protecting fertility if you may want children in the future; the state of your teeth; venous access (a catheter or port); and whether you could take part in a clinical trial.
You are not alone. Write down your questions, bring someone close to appointments and ask your doctor for the 24-hour contact number and what to do if you get a fever.
03Scientific explanation
Urgency depends on the type of leukemia: according to the NCI, acute leukemias such as AML develop quickly and usually need treatment soon after diagnosis. Acute promyelocytic leukemia is treated as an emergency because of the risk of bleeding, and treatment starts as soon as it is suspected. In contrast, according to the NCI, early CLL without symptoms is often managed with “watchful waiting”.
Genetic tests can change treatment: the 2022 ELN recommendations consider broad genetic testing at AML diagnosis (cytogenetics and a range of gene mutations) important for assigning a risk group and choosing treatment. Some targeted medicines are used only when a particular mutation is present. That is why, when the person’s condition allows, doctors sometimes wait for the first results.
Fertility: the 2018 ASCO guideline says doctors should discuss the possible effect of treatment on fertility, and ways to protect it, with every patient of reproductive age before treatment starts and as early as possible. In acute leukemia time may be short, but it is always right to ask.
Mouth health and clinical trials: the NCI advises a dental check before chemotherapy when possible, so that sources of infection can be treated. The NCI also presents clinical trials as one treatment option for some patients; you can ask whether a suitable trial exists.
04What happens in the body?
When should you get urgent help?
In the days after diagnosis, especially once treatment has started, call your team straight away or call an ambulance if you have: a temperature of 38 °C or higher, shivering, severe weakness or confusion; bleeding that will not stop, vomiting blood or black stools, a severe headache, changes in vision, breathlessness or chest pain. Do not wait.
Which tests usually happen in the first weeks?
Blood tests, bone marrow aspiration and biopsy, flow cytometry, cytogenetics (karyotype, FISH) and molecular tests show the exact type of leukemia. In addition, there is usually an ECG or echocardiogram of the heart, liver and kidney tests, tests for hepatitis and other infections, and sometimes imaging or a lumbar puncture. Go through the results with your doctor.
Things to discuss before treatment
Fertility: ask about options such as freezing sperm or eggs. Teeth: a dental check if possible. Venous access: do you need a catheter, PICC line or port? If a transplant is possible: tissue-type (HLA) testing. Clinical trials: is there a suitable trial for me? Work and paperwork: sick notes, insurance and authority for a relative to act for you.
How to prepare for appointments
Write your questions down beforehand and ask the most important ones first. If you can, bring someone close: they can take notes and remind you later. Keep all results and discharge letters in one folder and carry a list of your medicines (including vitamins and herbal products). Ask for any word you do not understand to be explained again.
About a second opinion
According to the American Cancer Society, getting a second opinion is normal and very common, and doctors usually understand. In chronic leukemias there is often time for this. In acute leukemia, delaying treatment can be dangerous, so a second opinion can be obtained without stopping treatment, for example by having your results reviewed at another centre.
05First steps from diagnosis to treatment
A typical sequence (simplified; your path may differ).
06A checklist for the first weeks
| Topic | Why it matters | Question for your team |
|---|---|---|
| Exact diagnosis | Treatment is chosen by type of leukemia | What is the full name of my leukemia? |
| Genetic results | Risk group and targeted medicines depend on them | Which results are we waiting for, and when? |
| General health | Heart, liver and kidneys affect the choice of medicines | Which checks do I need? |
| Fertility | Some treatments can affect the ability to have children | What can be done to protect it, and is there time? |
| Venous access | A comfortable, safe route for long treatment | Do I need a catheter or a port? |
| Urgent contact | Infection and bleeding can get worse within hours | What is the 24-hour number? |
| Clinical trial | Sometimes offers an extra treatment option | Is there a suitable trial for me? |
* This list is for general guidance. Your hematology team decides which steps apply to you and in what order.
07Key terms
- Diagnosis
- Identifying the exact disease.
- Subtype
- A more precise type of leukemia based on cell and genetic features.
- Risk group
- Grouping of leukemia by its expected response to treatment.
- Watchful waiting
- Regular monitoring without treatment while there are no symptoms.
- Echocardiogram
- An ultrasound scan of the heart.
- HLA typing
- A test that checks donor matching for a transplant.
- Fertility preservation
- Storing sperm, eggs or tissue before treatment.
- Central venous catheter
- A thin tube placed in a large vein for medicines and blood tests.
- Clinical trial
- A research study that tests new treatments.
- Second opinion
- A review of the diagnosis and plan by another doctor.
08Key points
- The first goal is to identify the exact type of leukemia.
- In acute leukemia, treatment usually starts quickly.
- Some chronic leukemias can be watched without treatment.
- Genetic results can shape the choice of treatment.
- Fertility, teeth and venous access are discussed before treatment.
- Write down questions and bring someone to appointments.
- Find out the 24-hour contact number in advance.
- Call without waiting if you have a fever or bleeding.
09Frequently asked questions
Why do we have to start treatment so quickly?
Acute leukemia cells multiply fast and quickly crowd out the bone marrow, which can lead to serious infections and bleeding. That is why treatment for acute leukemia usually starts within days. With chronic leukemias there is more often time.
Isn’t it dangerous to “wait” without treatment?
In some chronic leukemias, such as early CLL without symptoms, starting treatment early has not been shown to help. Regular monitoring lets doctors follow the disease and start treatment in good time when it is needed.
Why aren’t all the results ready on the same day?
Tests use different methods: some take hours, some days, and genetic tests longer still. Your doctor will explain which results are needed before treatment can start.
What should I tell my family and my employer?
How much you share is your choice. Practical help from loved ones, such as lifts, meals or childcare, is very valuable. Ask a social worker or your doctor about sick notes and other paperwork.
Can I trust what I read online?
Not all information is reliable, and statistics may not reflect your situation. Use trustworthy sources such as the NCI and the American Cancer Society, and discuss what you read with your doctor.
Should I change my lifestyle straight away?
In the first weeks, the main tasks are preparing for treatment and protecting yourself from infection. Make decisions about diet, supplements and exercise with your team, and do not start any product on your own.
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.
What will happen over the next few days?
When should we start treatment, and which tests are needed first?
Who is in my care team, and whom can I contact with questions?
Which number can I call day or night?
12Sources
- National Cancer Institute (NCI). Questions to Ask Your Doctor about Your Diagnosis
- National Cancer Institute (NCI). Questions to Ask about Cancer Treatment
- National Cancer Institute (NCI). Taking Time: Support for People With Cancer
- National Cancer Institute (NCI). Adult Acute Myeloid Leukemia Treatment (PDQ®) – Patient Version
- National Cancer Institute (NCI). Chronic Lymphocytic Leukemia Treatment (PDQ®) – Patient Version
- National Cancer Institute (NCI). Clinical Trials Information for Patients and Caregivers
- National Cancer Institute (NCI). Oral Complications of Chemotherapy and Head/Neck Radiation (PDQ®) – Patient Version
- National Cancer Institute (NCI). Female Fertility and Cancer Treatment
- National Cancer Institute (NCI). Male Fertility and Cancer Treatment
- National Cancer Institute (NCI). Infection and Neutropenia during Cancer Treatment
- American Cancer Society. Second Opinions for Cancer Treatment
- American Cancer Society. Making Treatment Decisions
- Journal of Clinical Oncology, 2018. Fertility Preservation in Patients With Cancer: ASCO Clinical Practice Guideline Update
- Blood, 2022. Diagnosis and management of AML in adults: 2022 recommendations from an international expert panel on behalf of the ELN