Chronic lymphocytic leukaemia (CLL)

Tests on blood or bone marrow samples that look for known abnormal changes in chromosomes that can happen with CLL. For example, parts of chromosomes may be missing, or you may have an extra chromosome. Read more about [chromosome changes in CLL].

A test called FISH analysis (fluorescence in situ hybridisation) makes abnormal genes glow (fluoresce) so that the doctor can identify the particular type of genetic abnormality. In CLL cells, chromosomes 11, 12, 13 and 17 often have defects. 

A FISH test can help your doctor to predict how your CLL might respond to a particular treatment, so they can recommend the best option for you.

Checking for proteins or markers on the surface of the leukaemia cells to diagnose CLL or give more information about your type of CLL. 

Using high-energy rays to take pictures inside your body to check for any enlarged lymph glands or to see the state of your general health.

A small operation, usually with a local anaesthetic, to take samples of your lymph glands to see if they contain cancer cells. This does not happen often when diagnosing CLL.

Using sound waves to look for abnormal changes inside your body. For example in your lymph glands or spleen.

Read more about ultrasound scans here.

A special type of X-ray that gives a detailed picture of the inside of your body. 

Read more about CT scans here.

This is a positive cytogenetic (chromosome) change. People with only this change often have a type of CLL that develops very slowly and doesn’t need any treatment for many years. Between 3 and 5 in every 10 people with CLL will have the del (13q) abnormality.

This change makes the leukaemia more difficult to control. Fewer than 1 in 10 people with CLL have the del (17p) change. If del (17p) is found, a FISH test may be done to see if a gene called TP53 is also missing. This abnormality is associated with a poorer prognosis (outlook), but there are treatments for this type of CLL. It doesn’t respond as well to chemotherapy as some some other types, but there are targeted therapies that work well. Missing parts of chromosome 11 (del 11q) is also associated with a poorer prognosis.

Between 4 and 6 out of every 10 people with CLL will have other cytogenetic changes in their CLL cells (for example, Trisomy 12), or none at all. The leukaemia often needs treatment, but usually not immediately. It can usually be controlled for a number of years with treatment.

Knowing if the IgVH gene is mutated can help to predict how your CLL will behave. B-cell CLL with mutated IgVH is typically less aggressive (progresses more slowly) than B-cell CLL with unmutated IgVH.

The Binet system has three stages: A, B and C. It measures the number of white blood cells and if you have anaemia (low red blood cells) or a reduced number of platelets. The Binet staging system also counts the number of areas in your body where you have enlarged lymph nodes. Lymph nodes are mainly found in the neck, armpits, groin, liver and spleen.

• Stage A: There are fewer than three areas of enlarged lymph nodes
• Stage B: There are three or more areas of enlarged lymph nodes
• Stage C: There are a reduced number of red blood cells, platelets or both.

The Rai system has five stages. The stage is described as 0-4, shown in roman numerals: 0, I, II, III and IV.

Your consultant may use both the Binet and Rai systems, so you will see both a letter and a roman numeral. For example, stage A0 or CIV. 

Your consultant may also use a different system. You don't need to understand all the details. The important thing is to understand what it means for you and your treatment.