Most cases of chronic lymphocytic leukaemia (CLL) are discovered during unrelated routine blood tests.

However, you should visit your GP if you display the typical symptoms described.

They will ask about your symptoms, as well as your medical and family history. Your GP will also carry out a physical examination to check for swollen glands, a swollen spleen and any signs of abnormal bleeding. You may also be asked to have a blood test.

If your GP suspects any form of leukaemia, they will refer you to a haematologist (a doctor who specialises in conditions that affect the blood).

Doctors use stages to describe the extent of the cancer. In the UK, the Binet staging system is used for CLL. It has three stages:

  • Stage A – where you have fewer than three areas of enlarged lymph nodes and a high white blood cell count
  • Stage B – where you have more than three areas of enlarged lymph nodes and a high white blood cell count
  • Stage C – where you have enlarged lymph nodes or spleen, a high white blood cell count and a low red blood cell or platelet count

An area of lymph nodes refers to lymph nodes in one part of your body, such as in your neck, under your arms or in your groin.

A blood sample will be taken and sent to a laboratory for a full blood count. Here, the different types of blood cells will be counted and the appearance of the cells checked. An abnormally high number of lymphocytes (white blood cells) will suggest you have CLL.

However, to confirm the diagnosis, the haematologist will need to carry out a procedure known as immunophenotyping. This involves examining the lymphocytes in detail to distinguish CLL from other conditions that can also cause a high lymphocyte count. This test is often carried out in a specialist laboratory and the results will usually be available in one to two weeks.

You will also have a peripheral blood film test, where your blood is looked at under a microscope. As CLL cells look different from normal white blood cells, this test can help identify the presence of these abnormal cells.

Genetic or molecular tests can also be carried out on blood and bone marrow samples. A test known as a fluorescence in situ hybridisation (FISH) test can be used to help identify abnormalities in the leukaemia genes. Doctors are able to use FISH to identify abnormal genes in the cells of about 80% of people with CLL.

Identifying gene abnormalities in this way is very useful because it allows treatments to be targeted more effectively.

Not all patients with CLL require a biopsy, but some do for diagnostic purposes. A biopsy involves removing some or all of an affected lymph node, which is then studied in a laboratory.

Biopsies are small operations that can often be carried out under a local anaesthetic (where the area is numbed). Rarely there are cases where the affected lymph node is not easily accessible and a general anaesthetic may be required (where you are asleep) to obtain a sample.

A pathologist (expert in the study of diseased tissue) will then check the tissue sample for the presence of leukaemic cells.

If you have been diagnosed with CLL, the medical team may decide to check which parts of your body it affects. As it is a cancer of the blood, it is often seen in many places. A scan can give a doctor more information that may help to determine when to start treatment.

This is done by a process called imaging. These techniques show us where affected lymph nodes are in the body and whether other organs (e.g. the spleen) are involved. These tests are normally done as an outpatient and may include:

A computerised tomography (CT) scan takes a series of X-rays that build up a 3D picture of the inside of the body and provide a more detailed picture than an x-ray.

In some cases, the haematologist may want to look at a sample of your bone marrow.

A bone marrow biopsy involves taking a small sample of bone marrow to examine under a microscope. This procedure is carried out under a local anaesthetic.

The haematologist will numb an area of skin at the back of your hip bone, before removing a sample of bone marrow using a needle. You may experience some discomfort during the procedure and have some bruising and discomfort in the area where the sample was taken for a few days afterwards. The procedure will take around 15 minutes to complete and you shouldn't need to stay in hospital overnight.

The bone marrow sample will be examined for abnormal cells and to determine how much of the bone marrow is involved.