Chronic lymphocytic leukemia, or CLL, is a type of blood cancer that affects white blood cells called lymphocytes. Unlike many solid tumors, CLL doesn’t form lumps in one spot. Instead, it affects the blood, bone marrow, and lymph nodes, and sometimes the spleen or liver.

Staging is important because it helps your doctors understand how advanced the disease is, which guides decisions about treatment and monitoring. In the U.S., the most commonly used system for staging CLL is the Rai system, which divides the disease into five stages based on blood counts and whether lymph nodes, the spleen, or the liver are enlarged.

Doctors determine the stage by looking at blood counts, including lymphocytes, red blood cells, and platelets. They also examine the lymph nodes, spleen, and liver to see if they are enlarged. Additional tests, such as flow cytometry and genetic testing, can provide more information about how the CLL may behave. This information is combined to assign a Rai stage, which helps guide treatment decisions and monitoring plans.

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Stage 0

At this stage, only a high lymphocyte count is present in the blood or bone marrow, while the lymph nodes, spleen, and liver appear normal. Many people feel completely well and may have no symptoms. 

Stage 0 doesn’t require treatment, but you’ll be monitored closely through regular check-ups and blood tests. Supportive care is used if mild fatigue or infections occur. Treatment is only started if the disease shows signs of progression or symptoms develop.

Stage I 

Stage I means lymph nodes are enlarged, but the spleen and liver remain normal. In many cases, doctors recommend continuing with watchful waiting with close monitoring. If symptoms appear or the disease shows signs of progression, your care team may recommend starting treatment.

Stage II 

Stage II is defined by enlargement of the spleen or liver, with or without enlarged lymph nodes. Patients may notice fullness in the abdomen, discomfort, or increased fatigue. Watchful waiting may still be appropriate if symptoms are mild, but treatment is recommended if the side effects of the cancer are starting to affect your quality of life. 

Stage III

With stage III CLL, you have low red blood cell counts and high lymphocyte counts. Treatment is generally needed at this stage and supportive care can be helpful to manage side effects. 

Stage IV 

Stage IV occurs when platelet counts are low and the lymphocyte count is high. Enlarged lymph nodes, spleen, liver, and low numbers of red blood count cells may also occur at this stage and your care team will recommend starting treatment soon.

Treatment options for CLL

Whether or not you need treatment depends on your Rai stage, symptoms, overall health, and certain features of your disease. As mentioned, many patients with early-stage CLL can simply be monitored closely without starting therapy right away. 

When treatment is needed, there are several options that are commonly used. Biomarker testing will help your doctor decide which drugs will be most effective for your diagnosis. Targeted therapies are often the first choice, which are designed to attack the CLL cells specifically. This can help control the disease while causing fewer side effects. With CLL, it’s not uncommon to have to switch treatments. Your care team will examine the results of your prior treatment to decide what your best course of action will be.

Clinical trials are another option for patients interested in trying newer therapies. Your care team will work with you to create a treatment plan that fits your specific situation, balancing effectiveness with side effects and quality of life.

Across all stages, maintaining healthy habits such as staying active, eating well, and preventing infections can support your overall health. 

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