Just diagnosed with Leukemia — what should I do first

First Steps After a Leukemia Diagnosis

I'm sorry you're facing this diagnosis. It's completely normal to feel overwhelmed right now. Here's what you should focus on in the coming days and weeks:

1. Understand Your Specific Type of Leukemia

Leukemia isn't just one disease—there are many subtypes, and knowing yours is crucial. Ask your doctor:

• What type of leukemia do I have? (AML, CML, ALL, etc.)
• What genetic or biomarker changes does my leukemia have?

According to the NCCN Guidelines for Patients: Acute Myeloid Leukemia, different subtypes are "grouped and treated based on the presence or absence of certain gene mutations or abnormal chromosomes." This information directly affects your treatment plan, so it's important to get clarity on this early.

2. Complete Your Diagnostic Testing

Your care team will likely order several tests if they haven't already. These typically include:

• Blood tests (Complete Blood Count, metabolic panel, liver/kidney function)
• Bone marrow biopsy and aspirate (removing a small sample of bone marrow to examine the cells)
• Genetic/biomarker testing (looking for specific mutations in your leukemia cells)
• Heart function tests (some treatments affect the heart)
• Imaging tests (CT or MRI scans, depending on your situation)

According to the NCCN Guidelines, "accurate testing is needed to diagnose and treat" leukemia. These tests help your doctors understand how aggressive your leukemia is and which treatments will work best for you.

3. Build Your Care Team

You'll want specialists involved in your care:

• Hematologist or hematologic oncologist (blood cancer specialist)
• Medical oncologist (cancer treatment specialist)
• Nurses and support staff

The NCCN Guidelines emphasize: "Those with [leukemia] should be treated at centers experienced in this type of cancer." Consider asking if your hospital has specialists in your specific leukemia subtype.

4. Ask Key Questions at Your Next Appointment

Write these down and bring them with you:

• What is my specific leukemia diagnosis and what does it mean?
• What tests do I still need, and when will results be available?
• What are my treatment options?
• What is the goal of treatment for my situation?
• How often will I need appointments and tests?
• What side effects should I expect?
• Are there clinical trials I might be eligible for?
• Who should I call if I have urgent questions or symptoms?

5. Organize Your Medical Information

• Keep a folder with all test results and reports
• Write down the names and contact information for each doctor on your team
• Make a list of all medications and supplements you're taking
• Keep track of your symptoms and how you're feeling

6. Get Support in Place

• Tell trusted family members or friends about your diagnosis
• Consider bringing someone to appointments to help take notes
• Ask about support groups (many hospitals have leukemia support groups)
• Look into counseling or mental health support—this is a stressful time

7. Don't Rush Major Decisions

While leukemia requires prompt treatment, you don't need to make all decisions immediately. Take time to:

• Understand your diagnosis fully
• Get all test results back
• Discuss options with your care team
• Ask questions until you feel informed

Important Resources

The NCCN Guidelines for Patients (available free at NCCN.org/patientguidelines) have detailed information specific to your leukemia type. The American Cancer Society and Leukemia & Lymphoma Society also offer patient education and support resources.

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This information is for educational purposes only. Always consult your healthcare team for personalized medical advice and decisions.