Doctors use one of two staging systems to classify CLL. But stage alone isn’t enough to assess treatment options and your outlook with CLL.

Chronic lymphocytic leukemia (CLL) is a lifelong condition for most people. This type of cancer is not curable, but many people can live for many years.

There are two main staging systems for CLL: Rai and Binet. These are based on how far the cancer has progressed in your body.

Doctors base treatment recommendations and your outlook with CLL on the CLL International Prognostic Index (CLL-IPI). The CLL-IPI takes into account the stage as well as your age, genetic factors, and biochemistry.

Doctors in the United States most often use the Rai system to stage CLL. This system looks at the lymphocytes in your blood, among other factors. If you have at least 5,000 lymphocytes per microliter of blood that all developed from the same original cell, you have lymphocytosis.

Lymphocytosis is present in all stages of CLL in the Rai system. The system also considers red blood cell (RBC) and platelet counts, as well as the sizes of your lymph nodes, spleen, and liver.

A person might receive a CLL diagnosis without any symptoms. As the condition progresses, they may experience:

  • fatigue
  • shortness of breath
  • weight loss
  • night sweats
  • low-grade fevers
  • infections

Stage 0

At stage 0, lymphocytosis is present. RBC and platelet counts are typical or near typical. There is no enlargement of the spleen, liver, or lymph nodes. For treatment classification, this is a low risk stage.

Stage 1

Stage 1 shares all the features of stage 0, except that the lymph nodes are enlarged. The other organs are of a typical size, and RBC and platelet counts are within regular range. This is an intermediate risk stage.

Stage 2

Stage 2 features enlargement of the spleen (splenomegaly) and possible enlargement of the liver (hepatomegaly) or lymph nodes. RBC and platelet counts are within regular range. This is also an intermediate risk stage.

Stage 3

In addition to lymphocytosis, there is a low RBC count (anemia), but platelet counts are at typical levels. There may or may not be an enlargement of the lymph nodes, liver, or spleen. Stage 3 is a high risk stage for the purposes of treatment.

Stage 4

In stage 4, at least one of the lymph nodes, spleen, or liver is enlarged. Your RBC count may be low, causing anemia. Your platelet count is also low (thrombocytopenia). This is a high risk stage.

Doctors in Europe more commonly use the Binet staging system for CLL. This system looks at CLL’s effect on five lymphoid tissue groups:

  • neck lymph nodes
  • groin lymph nodes
  • underarm lymph nodes
  • spleen
  • liver

The presence or absence of anemia (low RBC count) and thrombocytopenia (low platelet count) are also important.

Stage A

At stage A, there is no anemia or thrombocytopenia. Fewer than three lymphoid tissue groups are enlarged.

Stage B

Like at stage A, RBC and platelet counts at stage B are typical. However, three or more lymphoid tissue groups are enlarged.

Stage C

At stage C, anemia, thrombocytopenia, or both are present. Any number of tissue groups may be enlarged.

According to the American Cancer Society, there’s not enough evidence that early CLL treatment helps people live longer. So, treatment typically only occurs when the condition worsens or causes challenging symptoms.

The CLL-IPI helps doctors to determine a treatment recommendation. The CLL-IPI is a scoring system that considers these five factors:

  • Binet or Rai stage
  • age over 65 years
  • level of beta-2 microglobulin tumor marker in your blood
  • mutation or deletion of the TP53 protein
  • mutation of the IGHV gene

Doctors consider your score and symptoms in determining whether or not to proceed with treatment.

First-line treatments for CLL include:

Low dose radiation or surgery might be an alternative if only the spleen or lymph nodes are affected.

In high risk stages, a doctor might recommend a stem-cell transplant as first-line treatment.

Second-line treatments for CLL can include using first-line treatments you haven’t had before.

Resources for support

If you are living with CLL, you can find resources like information specialists and peer-to-peer support through the Leukemia & Lymphoma Society.

The American Cancer Society also offers support and online communities for survivors and loved ones.

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Here are answers to some questions people often ask about living with CLL.

What is the life expectancy for someone with CLL?

The survival rate for any cancer depends on several individual factors. Overall, the 5-year relative survival rate for CLL is 88%.

What factors can affect my outlook with CLL?

The CLL-IPI takes into account different factors that can affect your outlook with CLL. These factors include your age, genetics, blood testing, and Rai or Binet stage.

Is CLL a serious cancer?

CLL is not a curable cancer, but many people live for years without treatment. Most people have periods with treatment and periods without treatment. Even if the cancer goes away after treatment, doctors often expect it to come back.

The Binet and Rai staging systems for CLL are important components of determining your outlook with CLL. Doctors also consider your age, specific gene mutations, and blood chemistry to assess risk and recommend treatment. Options for treatment include targeted drugs, chemotherapy, monoclonal antibodies, radiation, surgery, and a stem cell transplant.