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Guide for patients and loved ones

Write down the name of the diagnosis

The exact name of your diagnosis is the key to the right information, the right treatment and the right questions.

Last updated: ~1 min read
A card in the wallet
Figure 1.A card in the wallet

01Short answer

Ask your doctor to write down the full diagnosis: the type of leukemia (for example AML, ALL, CML, CLL), the subtype, the genetic changes (for example NPM1, FLT3, BCR::ABL1), the risk group and the date of diagnosis. Keep this on a small card, in your phone and in your folder. It will be very useful when you see another doctor, call emergency services or contact a centre abroad. If you do not understand an abbreviation, ask what it means.

02Simple explanation

The word “leukemia” is not enough: the type and genetics matter.

A written name means safety and clarity.

03Scientific explanation

A modern diagnosis follows the WHO (5th edition) or ICC classification and often includes the name of the genetic change.

In an emergency, knowing the full diagnosis and latest treatment helps doctors make the right decision.

04What happens in the body?

What to write

Type and subtype; genetic and chromosome changes; risk group; date of diagnosis; treating centre and doctor.

Where to keep it

A card in your wallet, a note and photo on your phone, a copy in the cloud and a folder at home. Your caregiver should have a copy too.

A photo of the report
Figure 2.A photo of the report

How to use it

Show it to a new doctor, emergency staff, the pharmacist or a centre abroad, and read reliable sources about your own type.

A precise name: a genetic tag
Figure 3.A precise name: a genetic tag

05How to write the name

Four steps.

Ask for the full name — Type and subtype.1Ask for the full nameType and subtype.
Write it down — On a card and in the folder.2Write it downOn a card and in the folder.
Add the genetics — Changes and risk.3Add the geneticsChanges and risk.
Keep copies — Phone and cloud.4Keep copiesPhone and cloud.
Accurate informationYou read about your own type.
SafetyEveryone knows in an emergency.

06Key points at a glance

TopicIn brief
What to writeType and subtype; genetic and chromosome changes; risk group; date of diagnosis; treating centre and doctor.
Where to keep itA card in your wallet, a note and photo on your phone, a copy in the cloud and a folder at home. Your caregiver should have a copy too.
How to use itShow it to a new doctor, emergency staff, the pharmacist or a centre abroad, and read reliable sources about your own type.

07Key terms

Subtype
A more precise diagnosis.
Risk group
A grouping for outlook.
WHO classification
The international diagnostic system.

08Key points

  • Ask for the full diagnosis in writing.
  • Add the genetics.
  • Keep copies in several places.
  • Ask what abbreviations mean.

09Frequently asked questions

Can the diagnosis change?

It may be refined as new results arrive; update the card.

Whom should I show it to?

Every new doctor and emergency services.

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. Can the diagnosis change?

  2. Whom should I show it to?

My questions

12Sources

  1. National Cancer Institute (NCI). Questions to Ask Your Doctor about Your Diagnosis
  2. National Cancer Institute (NCI). Leukemia—Patient Version
  3. National Cancer Institute (NCI). Managing Your Care
  4. Cancer Research UK. Coping with cancer
  5. Cancer.Net (ASCO). ASCO Cancer Treatment and Survivorship Care Plans
  6. National Cancer Institute (NCI). Taking Time: Support for People with Cancer
  7. American Cancer Society. What a Cancer Caregiver Does
  8. National Cancer Institute (NCI). Infection and Neutropenia during Cancer Treatment
  9. National Cancer Institute (NCI). Complementary and Alternative Medicine (CAM)
  10. MedlinePlus. Complete Blood Count (CBC)
Medical disclaimerThis information is for educational purposes only and does not replace medical advice.
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