Diagnosing & Staging

Doctors run tests to confirm a chronic lymphocytic leukemia (CLL) diagnosis and determine the cancer stage and other factors of your CLL. Your doctor may recommend some tests more than once to understand if and how your CLL is progressing. These tests can tell you and your doctor a lot about your CLL, including your blood cell counts and genetic markers. That way you can work together to decide your next steps.1

Keep in mind, your doctor considers a lot of different factors to help inform how your CLL may progress and to develop your treatment plan. Your test results, cancer stage, physical health, and existing conditions can all play a role in your doctor’s recommendations.1

Tests to Confirm a CLL Diagnosis

Complete Blood Count (CBC)

A CBC is a routine blood test that measures the numbers of white blood cells, red blood cells, and platelets. This test can help determine whether you need additional tests.1,2

Blood Smear

A blood smear is used to spot B cells by looking at a sample of blood under a microscope.2

Flow Cytometry

Flow cytometry is often used to diagnose CLL. This test

  • Counts normal and abnormal B cells
  • Confirms that the abnormal B cells are copies of the same original cell (monoclonality)
  • Identifies the proteins in the cells’ surface that are specific to CLL (immunophenotyping)1,3

Tests to Check for Genetic Changes in Your CLL

DNA Sequencing

DNA sequencing uses blood or bone marrow cells to detect changes, or mutations. When it comes to CLL, DNA sequencing is used to test for mutations in the immunoglobin heavy chain variable (IGHV) region gene and in TP53.1

FISH Test

An interphase fluorescence in situ hybridization (FISH) test uses blood or bone marrow cells to look for changes in chromosomes and genes. The FISH test is often used to find missing parts of chromosomes (deletions, which are often written as "del"), or duplications of chromosomes. These could include changes such as del 13q, trisomy 12, del 17p, and del 11q. These changes, or mutations, can help determine whether your CLL is high or low risk.1,4

Learn what these changes mean for the outlook of CLL.

Karyotyping

A karyotype is a picture of all of your chromosomes in a cell. This test shows if there are any changes to the size, shape, and number of chromosomes. A "complex karyotype" means that the test found 3 or more unrelated changes in more than one cell.1

Additional Tests Your Doctor Might Suggest

Lymph Node Biopsy

A lymph node biopsy removes a part of or the whole lymph node for testing. Your doctor might order this test if your initial results don’t confirm a diagnosis. Your doctor may also recommend this test if your lymph nodes are larger than usual, which can suggest the disease has gotten worse.1-3

Bone Marrow Tests

Your doctor might recommend a bone marrow test to understand how advanced the cancer is and whether a treatment is effective. These tests involve removing a small amount of bone and bone marrow for testing.1,2

Imaging

At some point in your life, you may have had a CT scan or an ultrasound. These are types of imaging tests. They take pictures of the inside of your body. In CLL, these tests may be used to locate where the cancer is in the body, see if it’s spread, and see if a treatment is working.2

How Is CLL Staged?

When you were diagnosed, your doctor might have told you the stage of your CLL. As your doctor monitors your CLL, you might hear about changes in your stage. Staging estimates how far the cancer has progressed and what course it might take in the future. It also helps you and your doctor develop a treatment plan that’s right for you.1,2

There are two types of staging systems, the Rai staging system and the Binet staging system.2

The Rai staging system (pronounced "rye") is often used in the United States. This system has 5 stages, numbered 0 to 4.1,2

STAGE 0

High number of abnormal B cells1

STAGE 1

High number of abnormal B cells + enlarged lymph nodes1

STAGE 2

High number of abnormal B cells + enlarged lymph nodes + enlarged spleen or liver or both1

STAGE 3

High number of abnormal B cells + enlarged lymph nodes + enlarged spleen or liver or both + low hemoglobin1

STAGE 4

High number of abnormal B cells + enlarged lymph nodes + enlarged spleen or liver or both + low hemoglobin + low platelet counts1

You may also hear about the Binet staging system. This staging system is often used in Europe. It has 3 stages, labeled A, B, and C. Your stage is determined based on your physical exam and blood test results.1,2

Stage A

Less than 3 areas of enlarged lymphoid tissue groups (liver, spleen, and neck, groin, and underarm lymph nodes)2

Stage B

3 or more areas of enlarged lymphoid tissue groups (liver, spleen, and neck, groin, and underarm lymph nodes)2

Stage C

Low red blood cell and platelet counts2

Make sure you're scheduling and keeping appointments with your doctor, so you can share anything that may be important, like changes in symptoms.2,5

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References
  1. Referenced with permission from the NCCN Guidelines for Patients®: Chronic Lymphocytic Leukemia V.2019. © NCCN Foundation®. 2019. All rights reserved. Accessed May 1, 2019. To view the most recent and complete version of the guideline, go online to NCCN.org/patients. NCCN makes no warranties of any kind whatsoever regarding their content, use or application and disclaims any responsibility for their application or use in any way.
  2. American Cancer Society. Chronic Lymphocytic Leukemia. American Cancer Society website. https://www.cancer.org/cancer/chronic-lymphocytic-leukemia.html. Updated May 10, 2018. Accessed November 7, 2018.
  3. Referenced with permission from the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma V.4.2020. © National Comprehensive Cancer Network, Inc. 2019. All rights reserved. Accessed December 20, 2019. To view the most recent and complete version of the guideline, go online to NCCN.org. NCCN makes no warranties of any kind whatsoever regarding their content, use or application and disclaims any responsibility for their application or use in any way.
  4. The Leukemia and Lymphoma Society. Chronic Lymphocytic Leukemia. White Plains, NY: The Leukemia and Lymphoma Society; 2014. Publication No. PS34 40M.
  5. American Cancer Society. Talking with Your Doctor. American Cancer Society website. https://www.cancer.org/content/dam/cancer-org/cancer-control/en/booklets-flyers/talking-with-your-doctor-english-pdf.pdf. Updated November 17, 2015. Accessed October 10, 2018.
  6. Cancer Stat Facts: Chronic Lymphocytic Leukemia (CLL). National Cancer Institute website. http://seer.cancer.gov/statfacts/html/clyl.html. Published April 2018. Accessed February 13, 2019.