Chronic lymphocytic leukaemia (CLL)

Diagnosis and tests

Diagnosing CLL

Your family doctor (GP) will talk to you about your symptoms and arrange blood tests, if needed. If your blood test is abnormal you will be referred to hospital for more tests. Some tests can also help your doctor to learn more about your CLL and how it’s responding to treatment. Tests on blood and bone marrow can be found below.

Bone marrow biopsy 

Taking a sample of your bone marrow (and maybe bone). The sample is taken from the inside of your bone, usually the hipbone. 

The sample is examined under a microscope to see the number and type of cells in it. You may have this test to diagnose CLL and also to see how you are responding to treatment.

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.

Chromosome changes in CLL

Certain changes in chromosomes can affect how your CLL might progress and can help your medical team decide on the best treatment for you.

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.

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If you are diagnosed with chronic lymphocytic leukaemia, we're here for you. Our cancer nurses are here if you need information or just want to talk. They can help you to understand your diagnosis and what to expect, send you information and tell you about our services. 

Waiting for test results

While some results may come back quickly, others may take a few weeks. Waiting for results can be an anxious time. It may help to talk things over with your doctor or nurse or with a relative or close friend. You can also call our Support Line on 1800 200 700 or visit a Daffodil Centre to speak to a cancer nurse.

What are the stages of CLL?

Staging CLL means describing the extent of the disease. This helps your doctor to plan your treatment, as different stages need different treatments.

There are different ways to stage CLL. The 2 most common are:

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.

Transformation

Occasionally CLL cells can change (transform) into different types of blood cancers (such as Richter's syndrome, a fast-growing cancer of the lymphatic system or prolymphocytic leukaemia – PLL). This is very rare and may occur with a sudden increase in symptoms. For example, fevers, extensive weight loss and swollen glands. If your CLL transforms into a faster-growing cancer, you are more likely to need immediate treatment. You doctor will advise you about your treatment options.

Knowing the stage of your cancer helps your team to plan the best treatment for you. 


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