£
Donate

We're here for you if you want to talk

0808 2080 888

[email protected]

Chronic lymphocytic leukaemia (CLL) symptoms and diagnosis

We're here for you if you want to talk

0808 2080 888

[email protected]

Chronic lymphocytic leukaemia (CLL) tests after diagnosis

Once you've been diagnosed with CLL, you may have further tests to help your healthcare team check the stage of the cancer, decide whether you need treatment, and what treatment would be best.

Bone marrow aspirate (biopsy)

This is a procedure to check for any abnormalities in the bone marrow. A small amount of bone marrow is taken using a needle from the hip bone. You don’t need to stay overnight in hospital for this; you can have it as an outpatient using local anaesthetic or mild sedation. It’s usually quite quick but will be uncomfortable while the sample is being taken from the marrow – you can take painkillers if you need to.

Your doctors will then look at the bone marrow sample under a microscope to assess for any disease which might be in it.

You may not need to have a bone marrow sample taken if you’re not starting treatment in the near future. You’ll usually have a sample taken before you start treatment, as this will be helpful later to show how well you’ve responded to it. You may also need a bone marrow biopsy if you have very low levels of normal blood cells (cytopenia) when you’re diagnosed.

We have more information on bone marrow biopsies.

Bone marrow trephine

You’ll usually have a trephine biopsy at the same time. This is where a ‘core’ of bone marrow from the hip bone is taken, under local anaesthetic or mild sedation. This provides information about the structure of your bone marrow and the number and distribution of the different blood cell types – and cancer cells, if present.

Lymphocyte doubling time

This tests the length of time taken for the number of lymphocytes in your blood to double. It’s looked at with every full blood count and helps to show how quickly your CLL is progressing.

X-ray

X-rays provide good images of dense tissues, such as bone. For patients with CLL they’re mainly used to check for chest infections.

CT or CAT scan

You won’t usually have a CT scan if you’re not going to start treatment straight away. A CT scan is a type of X-ray that helps with staging, as it can check if any lymph nodes are affected and if any lymphatic organs, like the spleen, are swollen.

Magnetic resonance imaging (MRI) scan

People with CLL won’t usually have an MRI scan. If you do have one, it’s usually to look at certain parts of the body such as the central nervous system.

Fluorodeoxyglucose positron emission tomography (FDG PET or PET scan)

CLL patients rarely have this scan, unless your doctors are assessing whether your CLL might have developed into a kind of blood cancer called Richter’s syndrome. It’s similar to an MRI, but you’re injected with a radioactive tracer. The levels of radiation used are very small and won’t harm you or anyone nearby.

Scans

We have more information about scans used diagnose and monitor blood cancer.

Liver function tests

This is a blood test to check if your liver is working normally. It’s very important to test this if you need chemotherapy, as many of the drugs are broken down in the liver. If your liver isn’t working normally, it may be necessary to adjust your doses.

Urea and electrolytes

This is a blood test to check how well your kidneys are working. The results will help your doctors calculate the doses of drugs you’ll need. It’ll also show any damage that may have been caused either by the cancer or your treatment and can show if you’re dehydrated. You’ll usually have your kidneys checked every time you have an appointment at the hospital.

Further tests

There are several further tests which some people might have, known as prognostic markers or prognostic tests. They might not be done at all hospitals, and in some cases you might only have them if you’re taking part in a clinical trial. They will help your doctors find out more about your prognosis (outlook) but aren’t used to decide whether you need treatment or not.

All kinds of cancer, including blood cancer, involve changes in genes in the affected cells. This isn’t the same thing as a faulty gene that you inherit from a family member which causes cancer.

Information about these gene changes can help doctors to decide on the treatment you’ll have. The study of these changes is called cytogenetics or molecular genetics.

Cytogenetic tests (sometimes called FISH tests) are usually done on cells from the blood or from the bone marrow before you start any treatment. This is because there’s one particular abnormal change (called 17p deletion, TP53 deletion or mutation) which means you’ll be less likely to respond to a drug called fludarabine, which is often used to treat CLL. Less than 10% of patients will have this abnormality at the time when they need treatment. However if your cells do have 17p deletion, your consultant will talk to you about different treatment options.

Sometimes your cytogenetic results might look normal. This doesn’t mean there aren’t any abnormalities – if you have CLL there will usually be some there – it just means they’re too small to detect, or scientists simply haven’t discovered certain abnormalities yet.

One particular type of cytogenics test is for IgHV gene status. If you have CLL cells with unmutated IgHV genes your condition may progress more quickly. This test is only done once, as the result won’t change.

This measures the level of a particular protein called Beta-2 microglobulin or B2M in your body. Your healthcare team may use it to find out more about the stage of your condition and your prognosis (outlook), or to monitor the progress of your treatment.

This is a way of looking at the pattern of proteins on your cells.

Samples from your bone marrow or blood cells are taken from a biopsy or blood test. In the lab, these are combined with a particular type of antibody (a protein made by your white blood cells to fight infection), which will stick to the surface of abnormal cells, but not to a normal cell.

As the cells pass through a machine, the results are plotted on a graph.

Your samples may be checked for the following markers:

  • Zeta-associated protein 70 (ZAP–70)
  • CD38 antigen

These tests can help give a clearer idea of your outlook.

Although this isn’t a prognostic test, it’s important if you’re about to have treatment, as treatment can reactivate the hepatitis B virus. This is only the case if you’ve had it in the past but it’s now not active (dormant) in your body. Your consultant will explain more about this before you start your treatment.

We're here for you if you want to talk

0808 2080 888

[email protected]