Once you have had tests that show you have chronic lymphocytic leukaemia (CLL) and whether it has spread, your doctor will tell you the stage of the leukaemia. This staging helps the doctor decide on the best treatment for you. The expected outcome of your disease is called the prognosis, but it is only a prediction and some people do not find it helpful or even prefer not to know.
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Staging systems are often used by doctors to work out how far the leukaemia has progressed. This will help determine a person’s prognosis (outlook) and guide the treatment.
There are two staging systems commonly used for CLL: the Binet system and the Rai system. Most Australian doctors use the Binet system (see below). The Rai system divides CLL into five stages and separates these stages into low-, intermediate- and high-risk groups. It is used mainly in the United States.
- Stage A – A high number of white blood cells but fewer than three enlarged areas of lymph tissue (lymph nodes, liver and/or spleen)
- Stage B – A high number of white blood cells and three or more enlarged areas of lymph tissue
- Stage C – A high number of white blood cells with a low number of red blood cells (anaemia) and/or platelets (thrombocytopenia)
Prognosis means the expected outcome of a disease. You will need to discuss your prognosis with your doctor, who will be able to give you an indication of what stage leukaemia you have (see above).
It is not possible for any doctor to know the exact course of your disease. However, your doctor might be able to tell you whether any of your test results, particularly the genetic or chromosomal tests, can help predict how the CLL may respond to particular forms of treatment.
While CLL is not generally a curable disease, the outlook for people with CLL is improving constantly. For many people, CLL progresses slowly, treatment is never required and they live a normal life span. For others, CLL progresses more quickly, but treatment controls the CLL and allows them to have a good quality of life for many years.