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Guide for patients and loved ones

New diagnosis: first steps

A diagnosis changes life in an instant. In the first days a few clear steps bring stability.

Last updated: ~1 min read
First footprints
Figure 1.First footprints — New diagnosis: first steps

01Short answer

First steps: take a deep breath and give yourself time. Write down the full name of the diagnosis and the genetic results. Learn your team’s emergency number and the fever rule. Gather documents in one folder and prepare a list of medicines and allergies. Ask about the aim, schedule and place of treatment. Plan practical matters with work and family. Share with one or two trusted people. Discuss fertility before treatment starts. Ask for a second opinion if needed.

02Simple explanation

Three essentials for day one: the diagnosis name, the emergency number, a folder.

The rest can come gradually.

03Scientific explanation

In acute leukemias treatment often starts within days, so practical matters (work, children, paperwork) must be handled in parallel.

Before treatment, fertility preservation, a central line, a dental check and vaccines may be discussed.

04What happens in the body?

Medical steps

Diagnosis and genetics, the treatment plan, emergency contact, fertility, a line and preparatory tests.

Practical steps

Telling your employer, sick leave, help with children and the home, transport and insurance papers.

A new folder and a list
Figure 2.A new folder and a list

Emotional steps

Making room for feelings, talking with loved ones and, if needed, a psychologist. You do not have to know everything at once.

Support
Figure 3.Support — New diagnosis: first steps

05First steps

Four steps.

Pause — A moment to breathe.1PauseA moment to breathe.
Write the diagnosis — Full name and genetics.2Write the diagnosisFull name and genetics.
Emergency plan — Number and fever rule.3Emergency planNumber and fever rule.
Ask for help — People close to you.4Ask for helpPeople close to you.
StabilityClear steps reduce chaos.
SafetyThe emergency plan is ready.

06Key points at a glance

TopicIn brief
Medical stepsDiagnosis and genetics, the treatment plan, emergency contact, fertility, a line and preparatory tests.
Practical stepsTelling your employer, sick leave, help with children and the home, transport and insurance papers.
Emotional stepsMaking room for feelings, talking with loved ones and, if needed, a psychologist. You do not have to know everything at once.

07Key terms

Fertility preservation
Storing sperm or eggs before treatment.
Sick leave
A document excusing you from work.
Second opinion
Another specialist’s view.

08Key points

  • Write down the diagnosis.
  • Learn the emergency number.
  • Gather your documents.
  • Accept help.

09Frequently asked questions

When will treatment start?

It depends on the type; in acute leukemia often quickly.

Will a second opinion delay treatment?

Discuss it with your doctor; in acute cases a delay can be risky.

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. When will treatment start?

  2. Will a second opinion delay treatment?

My questions

12Sources

  1. National Cancer Institute (NCI). Managing Your Care
  2. National Cancer Institute (NCI). Questions to Ask Your Doctor about Your Diagnosis
  3. National Cancer Institute (NCI). Adjusting to Cancer
  4. National Cancer Institute (NCI). Infection and Neutropenia during Cancer Treatment
  5. Cancer Research UK. Coping with cancer
  6. Cancer.Net (ASCO). ASCO Cancer Treatment and Survivorship Care Plans
  7. American Cancer Society. What a Cancer Caregiver Does
  8. National Cancer Institute (NCI). Female Fertility and Cancer Treatment
  9. National Cancer Institute (NCI). Male Fertility and Cancer Treatment
  10. National Cancer Institute (NCI). Caring for the Caregiver
Medical disclaimerThis information is for educational purposes only and does not replace medical advice.
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