Chronic lymphocytic leukaemia (CLL)

You may have different types of blood tests. For example, a full blood count finds out the different types of blood cells in your blood. This test can also give your doctor an idea of your general health. You will have frequent blood tests if you have CLL.

Chromosomes are structures that contain DNA. These carry genetic information, which tell your body how to grow and develop. Chromosome tests can find out about abnormalities in your chromosomes that are connected to your CLL. For example, parts of chromosomes may be missing or you may have an extra chromosome. 

An example of a chromosome test is called FISH analysis (fluorescence in situ hybridisation). Genes are specific parts of DNA. FISH analysis 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. About 3 in every 4 CLL patients have chromosome changes in their CLL cells.

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.

This test checks what kind of proteins or markers are on the surface of your leukaemia cells. This test can be done on your blood or bone marrow. This is often how CLL is diagnosed. 

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

If your glands are enlarged, a biopsy (sample) of the tissue may be taken. However, this test is rarely needed.  

It involves a small operation, usually with a local anaesthetic, meaning you will be awake for the procedure.

The gland or part of the gland is removed and sent to a laboratory for tests.

This is a scan that uses sound waves to look at organs and tissues in your body. For example, in your lymph glands or spleen.

Read more about ultrasound scans here.

This is a special type of X-ray that gives a detailed 3D picture of your lymph glands and organs such as your spleen.  

Read more about CT scans here.

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. 

Trisomy 12, also known as tri 12, means that you have an extra copy of the whole of chromosome 12. CLL with trisomy 12 often causes large lymph nodes. Modern targeted treatments often work well for CLL with trisomy 12.

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.

TP53 is one of the most important genes that can be damaged in CLL cells. Between 5% and 10% of people with CLL have mutated TP53 or absent TP53. 

If you have CLL with TP53 abnormalities, there is a small chance that the disease may relapse (come back) sooner compared to people without an abnormal gene. However, many of the drugs available today are very effective in treating CLL with abnormal TP53 genes.

The Binet system has three stages: A, B and C. It measures the number of white blood cells and checks 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 3 areas of enlarged lymph nodes
• Stage B: There are 3 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 A 0 or C IV.