CLL symptoms and diagnosis

Updated 10 Aug 2017

There are some symptoms you might have before you’re diagnosed and some symptoms you might have afterwards. Not everyone will have the same symptoms.

It’s important that you understand your diagnosis – it might be a good idea to ask your consultant to write it down so you can use it if you’re looking for more information or support, or if you need to tell other people about it.

Signs and symptoms

Before you’re diagnosed

It’s likely that you won’t have any symptoms at all before or when you’re diagnosed. That’s why so many patients with CLL are diagnosed after routine blood tests or when a doctor finds swollen lymph glands at a check-up.

However, you may have noticed the following symptoms before you were diagnosed with CLL:

  • extreme tiredness (fatigue) and/or weakness
  • swollen lymph nodes (glands)
  • drenching night sweats
  • fast and significant weight loss without trying
  • high temperature (fever) without any other signs of infection
  • repeated infections (such as colds and flu).
  • Some people have one or two of the symptoms; others may have all of them.

After you’re diagnosed

If you get any new symptoms after you’ve been diagnosed, or if you feel unwell, contact your hospital straight away. Your hospital team will tell you whether you need to see them, or if you can see your GP instead.

Symptoms of CLL usually develop slowly and you might not be sure of what to look out for. Here are the main ones:

  • getting tired and breathless more quickly
  • drenching night sweats
  • losing weight quickly, when you’ve not been dieting
  • a high temperature (fever) without any other signs of infection
  • swollen lymph nodes (swellings in your neck, armpits, groin, or under your collarbone) – if you had swollen lymph nodes before you were diagnosed, see your doctor if they increase in size or you notice more of them
  • feeling full after only eating small amounts, or discomfort or pain under your ribs on your left side – this can mean your spleen is enlarged.

Infections

Because of your CLL, you’re more likely to get infections. The most common signs of infection are:

  • raised temperature
  • cough or sore throat
  • confusion or agitated behaviour, especially if it comes on suddenly – this is more common in older people
  • rapidly feeling more poorly
  • fast heartbeat and breathing
  • difficulty in passing urine or producing little or no urine
  • pain which comes on quickly and gets worse.

If you’re receiving treatment, your doctor will probably suggest that you contact your hospital team if you have signs of an infection. If you’re not receiving treatment, for example if you’re on ‘watch and wait’, you may be able to see your GP instead. Speak to your specialist about spotting infections and who to call.

Tests and diagnosis

You’ll have a set of tests to confirm whether you have CLL or not. If you’re diagnosed with CLL, your healthcare team at the hospital may then do further tests to ‘stage’ your cancer (see how much it’s developed). At any time, you can ask your healthcare team to tell you why you’re having a certain test and what the results mean.

Tests to diagnose CLL

Here’s an overview of the tests you’ll have to confirm whether you have CLL.

Full blood count

A full blood count (FBC) measures the number of each type of cell in the blood: red cells, white cells and platelets. You might be sent for this test by your GP as part of a routine check-up. Other patients might have one when they’re in hospital for something else.

If your FBC shows that you might have CLL, you’ll need to go to hospital for more tests. If you’re diagnosed with CLL, you’ll have regular FBCs to monitor your condition.

Immunophenotyping

On its own, an FBC doesn’t confirm a CLL diagnosis. You’ll need to have more specialist tests such as immunophenotyping to do this. Immunophenotyping is a technique used to find out if you have abnormal CLL cells in your blood and if so, how many there are. It’s very sensitive – even if there’s only a small number of CLL cells there, it can still see them.

Peripheral blood film

You might also have a peripheral blood film test, where your blood cells are looked at under a microscope. Because CLL cells look different to normal white blood cells, this test can help to identify any of these abnormal cells in your blood. If you have CLL, there will be more lymphocytes in the blood film than there should be.

Lymph node biopsy

Most people with CLL won’t need a lymph node biopsy to have a diagnosis, because the condition is usually diagnosed in the blood. You might need a lymph node biopsy to make a diagnosis if you’ve got swollen lymph nodes and your FBC is normal. This could mean you have what’s sometimes referred to as small lymphocytic leukaemia or SLL. Or much more rarely, it might be due to another condition called Richter’s syndrome (a different type of lymphoma). A small number of CLL patients go on to develop this condition, where there’s usually a more rapid growth of lymph nodes in a single site.

Another reason you might have a lymph node biopsy is to rule out other lymphoid diseases such as mantle cell lymphoma (MCL).

A lymph node biopsy is a minor surgical procedure where a small sample is taken from a lymph node then studied under a microscope to check for signs of disease. You’ll need a small number of stitches but you can normally go home on the same day and have them removed around a week later. If the node is easy to reach, the biopsy can be done under local anaesthetic.

Sometimes the whole lymph node is removed; this is called an excision biopsy. This procedure may be helpful to improve the accuracy of a diagnosis.

Tests after diagnosis

Here’s an overview of further tests you might have to help your healthcare team stage your cancer and decide, with you, what type of treatment would be best and when.

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.

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.

The procedure won’t cause any pain. You’ll lie on a table that moves into a cylindrical tunnel while the pictures are taken. Your body is never completely enclosed and you’ll be able to talk to the person who takes and assesses the images (the radiographer) all the time. You may need to have a dye injected into one of your veins, to help get a better image.

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.

This scan shows up soft tissues (non-bony parts) and uses radio waves rather than X-rays. You’ll be asked to lie on a table which will move you through the scanner. It isn’t painful but it can take up to an hour to complete and some people find it claustrophobic. As with a CT scan, you might need to have a dye injected into one of your veins to get a better image.

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 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.

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 patients 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. These tests include:

Cytogenetics

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.

Beta-2 microglobulin (B2M) test

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.

Immunophenotyping (flow cytometry)

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.

Virology

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.

> Find out more information on tests from a website supported by the Department of Health

Staging

Staging describes the extent or severity of a person’s cancer. Staging for solid cancers, like breast or lung cancer, is based on the size of the original tumour and on how much it spreads from the original site of the tumour. For conditions like leukaemia this isn’t the case, because the leukaemia cells are spread throughout the blood and bone marrow.

There are two different ways of staging CLL. They both look at the number of CLL cells in your blood, the number of affected sites of lymphoid tissue and how much your condition has affected the production of normal blood cells.

The Binet system

The system most used in Europe is called the Binet system. The Binet system has three stages (A, B and C) with C being the most advanced stage.

The Rai system

In America there is a different system called the Rai system. The Rai system has five stages (0 to IV) with IV being the most advanced stage. Rai stage 0 patients have just a raised lymphocyte count – this is similar to patients with MBL.

PIF memberStandard member