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Guide for patients and loved ones

Step-by-step guide: from diagnosis to follow-up

A leukemia diagnosis changes life in an instant, and in the first days it is hard to know where to start. This guide breaks the road into stages: the first steps after diagnosis, getting ready for treatment, treatment in hospital and at home, and then follow-up. For each stage we have gathered questions to ask your doctor, things to take to hospital, ways loved ones can help and a short checklist.

Last updated: ~5 min read
A translucent glowing road winding into the distance on a dark navy background, with softly shining beacons evenly spaced along it.
Figure 1.Concept: the road with leukemia becomes clearer when it is broken into stages.

01Short answer

The road with leukemia usually passes through four stages: diagnosis, building the treatment plan, treatment (in hospital and at home) and follow-up after treatment. At every stage a few simple steps make things much easier: write down the exact name of the diagnosis and its genetic features, keep all documents in one folder, get your team’s 24-hour phone number, prepare your questions in advance and choose one loved one as your main helper. During treatment the most important rule does not change: if you have a fever or another warning sign, contact your team straight away. This guide is general; your plan is decided by your hematology team.

02Simple explanation

1. The first days after diagnosis. Write down the full name of the diagnosis: the type of leukemia and, if known, its subtype and genetic markers. Ask for copies of test results and summaries, and find out the number you can call your team on day and night.

2. Getting ready for treatment. Ask your doctor about the aim of treatment, its schedule and the expected side effects. If you would like to have children in the future, discuss this before treatment starts. A central venous catheter or port is often put in.

3. The treatment period. In acute leukemia, part of treatment takes place in hospital. Infection prevention, hand hygiene, safe eating and the fever rule are the core of this period. Record symptoms and medicines in a diary.

4. Between courses and at home. Care continues until blood counts recover. At home, too, a thermometer, your medicine list and emergency numbers should always be within reach.

5. After treatment. Follow-up tests, monitoring for late effects and a gradual return to everyday life begin. Ask for a written treatment summary and follow-up plan.

03Scientific explanation

Asking questions helps: the NCI offers lists of questions to ask your doctor about diagnosis and treatment: the exact name of the disease, the aim of treatment, alternatives, side effects and how treatment will affect daily life. It recommends writing questions down in advance and bringing someone close to you to appointments.

Fertility preservation: the NCI notes that some cancer treatments can affect the ability to have children, so it is important to discuss this before treatment begins. In acute leukemia treatment often has to start urgently, and options may be limited; your doctor will tell you what is possible.

Infection risk: according to the NCI and the American Cancer Society, the risk of infection is highest when neutrophils fall after chemotherapy, and fever is sometimes the only sign of infection. That is why a fever means contacting your team straight away.

A plan for after treatment: ASCO recommends that patients receive a treatment summary and a follow-up (survivorship care) plan when treatment ends: which medicines were given, which tests are needed and when, and which signs to watch for.

04What happens in the body?

Key questions for your doctor

What is the exact name of my leukemia and what are its genetic features? What is the aim of treatment and how long will it last? What side effects should I expect? When should I call straight away, and on which number? How will treatment affect my work, my family and any plans to have children?

What to take to hospital

Your ID and a folder of medical documents, a list of medicines, your phone and a long charging cable, comfortable clean cotton clothes and slippers, a soft toothbrush, unscented cream and lip balm, a water bottle, a notebook and pen, earplugs, and a book or headphones. Check the ward’s rules in advance: many hematology wards do not allow fresh flowers or potted plants.

A half-open translucent glowing bag on a dark navy background, holding the glowing outlines of simple items such as a water bottle, a folder, a soft blanket and a charging cable.
Figure 2.Getting ready for hospital: packing what you need in advance eases anxiety.

How loved ones can help

Choose one person as the main contact, who talks to the doctors and passes news on to the rest of the family. Offer specific help: meals, transport, childcare, paperwork. Do not visit if you are ill. Caregivers also need to remember their own rest and health.

Documents and a diary

Keep all test results, summaries and prescriptions in date order in one folder, and electronically on your phone. In a diary, note your temperature, symptoms, medicines and questions; this helps a great deal at appointments.

After treatment

Go to follow-up appointments on time and tell your team about any new signs. Tiredness and anxiety can last for a while after treatment; this is normal, and it is worth talking about.

05The main stages of the road

From diagnosis to follow-up (simplified).

Diagnosis — Exact name, documents, contact number.1DiagnosisExact name, documents, contact number.
Plan — Aim, schedule, questions.2PlanAim, schedule, questions.
Treatment — Hospital, home, infection prevention.3TreatmentHospital, home, infection prevention.
Follow-up — Tests and returning to life.4Follow-upTests and returning to life.
Folder and diaryEverything in one place.
A helperOne loved one is the main contact.
Emergency ruleWith a fever, call straight away.

06A short checklist

StageWhat to doWhy
DiagnosisWrite down the full name of the diagnosis and its genetic markersImportant for treatment and a second opinion
DiagnosisSave your team’s 24-hour number in your phoneSo no time is lost in an emergency
PreparationWrite down questions and bring someone to appointmentsNerves make it easy to forget things
PreparationDiscuss any plans to have childrenSome options exist only before treatment
TreatmentKeep a thermometer, diary and medicine list readyTo spot fever and side effects in time
Follow-upGet a treatment summary and follow-up planFuture doctors will need them

* This list is general; your team’s advice always comes first.

07Key terms

Discharge summary
A short written summary of treatment given when you leave hospital.
Treatment plan
A plan showing which treatment is given, when and for how long.
Central venous catheter
A thin tube placed in a large vein for medicines and blood tests.
Port
A small device under the skin connected to a vein.
Neutropenia
Too few neutrophils; raises the risk of infection.
Fertility preservation
Steps taken before treatment to protect the chance of having children later.
Caregiver
A loved one who looks after the patient day to day.
Follow-up plan
A plan showing which tests are needed after treatment, and when.
Symptom diary
A notebook for recording temperature, symptoms and medicines.

08Key points

  • Write down the full name of the diagnosis and its genetic features.
  • Keep your team’s 24-hour number within reach at all times.
  • Prepare your questions in advance.
  • Discuss plans to have children before treatment starts.
  • Keep all documents in one folder.
  • Choose one loved one as the main contact.
  • With a fever, call straight away.
  • After treatment, ask for a summary and a follow-up plan.

09Frequently asked questions

I forget a lot at appointments. What can I do?

Write your questions down in advance, bring someone close to you and note the answers. With the doctor’s permission you can also record the conversation. It is normal to ask again about anything you did not understand.

How long will I be in hospital?

It depends on the type of leukemia and the treatment. In acute leukemia, intensive treatment may mean several weeks in hospital, while some treatments are given as an outpatient. Ask your doctor for an approximate plan.

How can my loved ones help me?

With specific tasks: meals, transport, housework, children, paperwork. Having one main contact prevents mix-ups with information. Loved ones who are ill should not visit.

Whom should I tell about the diagnosis, and how?

You decide when and whom to tell. It usually helps to start with close family and to speak simply and honestly. Children need an explanation that suits their age.

Can I work during treatment?

It depends on the type of leukemia, the treatment and the kind of work. Intensive treatment often means a break from work, while many people with chronic leukemia keep working. Talk to your doctor and your employer.

Treatment has ended. What now?

Follow your follow-up plan, attend tests on time and report any new signs. Gradually return to physical activity and everyday life. Sharing your feelings makes this transition easier.

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. What are the main stages of my journey from diagnosis to follow-up?

  2. Which tests will be done at each stage?

  3. Which stages will be outpatient and which in hospital?

  4. How will you judge the result at the end of each stage?

My questions

12Sources

  1. National Cancer Institute (NCI). Questions to Ask Your Doctor about Your Diagnosis
  2. National Cancer Institute (NCI). Questions to Ask Your Doctor about Treatment
  3. National Cancer Institute (NCI). Taking Time: Support for People with Cancer
  4. National Cancer Institute (NCI). Adjusting to Cancer
  5. National Cancer Institute (NCI). Support for Families When Someone Has Cancer
  6. National Cancer Institute (NCI). Caring for the Caregiver
  7. American Cancer Society. What a Cancer Caregiver Does
  8. National Cancer Institute (NCI). Infection and Neutropenia during Cancer Treatment
  9. American Cancer Society. Neutropenia (Low White Blood Cell Counts)
  10. National Cancer Institute (NCI). Fertility Issues in Girls and Women with Cancer
  11. National Cancer Institute (NCI). Fertility Issues in Boys and Men with Cancer
  12. National Cancer Institute (NCI). Managing Costs and Medical Information
  13. National Cancer Institute (NCI). Follow-Up Medical Care
  14. Cancer.Net (ASCO). ASCO Cancer Treatment and Survivorship Care Plans
  15. Cancer.Net (ASCO). Talking With Family and Friends
  16. NCCN. NCCN Guidelines for Patients
Medical disclaimerThis information is for educational purposes only and does not replace medical advice.
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