Diagnosis

If CLL is suspected, a number of tests will be carried out.

The Full Blood Count (FBC)

FBC is one of the key tests and is usually the first step.

Blood contains three types of cells:

  • Red blood cells carry oxygen to all tissues in the body. Muscles and other tissues need oxygen to produce energy from food.
  • White blood cells fight and prevent infection. There are five different types of white blood cells.
  • Platelets. These stick together and stop bleeding, for example at a cut or bruise.

For an FBC a sample of blood is taken and examined in the laboratory. The number and appearance of red cells, white cells and platelets are recorded and compared with normal blood test results.

However, an FBC on its own does not confirm CLL and further tests will be required.

The most common tests include:

  • Immunophenotyping. This is a laboratory technique to find out if there are abnormal blood cells and if so how many. It’s a very sensitive test and can spot even small numbers of CLL cells.
  • Peripheral Blood Film. This is a look at the blood cells under a microscope, which can help identify any abnormal cells.
  • Lymph Node Biopsy. Most patients won’t need this, as usually blood tests are sufficient for a diagnosis. However, it may be necessary if your nodes are swollen, but the blood tests show as normal. This can be associated with Small Lymphocytic Lymphoma (SLL).

A lymph node biopsy is a minor surgical procedure where a small sample is taken from a lymph node, then examined under a microscope to help confirm the diagnosis.

Further tests are carried out when the time comes to consider treatment.

Staging

Once diagnosed, your consultant will ‘stage’ your CLL. Staging is used to describe where the CLL is located and the extent to which the CLL is affecting the blood count and the number and size of lymph nodes. Staging CLL in this way helps your consultant to predict how quickly the cancer may grow and to keep track of it.

There are two main systems to stage CLL. Most doctors in the UK use the Binet system. In the USA, doctors commonly use the Rai system.

The Binet Staging System

This is a three-step staging system (A, B and C) based on the number of swollen lymph node areas and blood cell counts.

Stage A

  • No anaemia and a normal platelet count
  • Fewer than three areas of lymph node enlargement

Stage B

  • No anaemia and a normal platelet count
  • Three or more areas of lymph node enlargement

Stage C

  • Anaemia and/or low platelet count, regardless of the number of areas of lymph node enlargement

What’s the outlook?

It is possible to have CLL and still have a good quality of life.

Many patients have no symptoms and carry on with life as normal. For some, their CLL may be so slow developing that treatment is not necessary. Others can manage their condition with the appropriate treatment.

New treatments introduced in the last few years mean that, generally speaking, patients now have a better prognosis (outlook) than before.

What do my blood results mean?

As a CLL patient, you will need to have regular blood tests to monitor the level of CLL cells in your blood and also to look at your general health.

You will find it useful to keep a copy of your blood results to help you see how you are progressing.

One of the main tests your medical team is interested in is the Full Blood Count (FBC). This measures how many blood cells of each kind there are in your blood. The FBC is important as it shows how the CLL, or treatment, is affecting you. The following chart shows the main blood counts that your medical team will be focusing on. It is useful to know some of the medical terms that may be used in discussions with your medical team.

White CellsRed CellsPlatelets
Medical name:NeutrophilsErythrocytesPlatelets
LymphocytesThrombocytes
What they do:Fight infectionCarry oxygenStop bleeding
Low counts are called:NeutropeniaAnaemiaThrombocytopenia
SymptomsInfectionsTiredness, BreathlessnessBruising, bleeding

How many of each kind of blood cell should you have?

In a healthy person, the blood counts usually stay the same, with slight variations (both up and down) over time or because of infections. The table below shows how many of each kind of blood cell a healthy person will have. If your counts are outside the ranges shown, your doctor will monitor you carefully to see if there is a trend that could in the future lead to treatment.

White cells Red cellsHaemoglobin*NeutrophilPlatelets
(109/1)(109/1) (g/dl)(109/1)(109/1)
Adult Male4.0 to 11.04.5 to 6.513.0 to 18.0 2.0 to 7.5150 to 440
Adult Female4.0 to 11.03.8 to 5.011.5 to 16.52.0 to 7.5150 to 440

Note that these counts must be assessed by a doctor. They will be different for patients of West Indian or African ethnicity.

*Haemoglobin is a protein used by red blood cells to distribute oxygen to other tissues and cells in the body.

With CLL, white cell counts tend to go up, often well above normal, while the other cell counts tend to go down. This is because the white cells crowd out the other cells or prevent from them being manufactured. However, remember:

  • Your blood tests must be looked at as a trend over time. A single or even a pair of results can be misleading. Many factors, other than CLL, can cause the blood counts, including the lymphocyte count to go up or down – infection, trauma, operations, other illnesses, medication etc. So, any changes must be viewed in the broader context.
  • Tests can be reported as ‘normal’ even though CLL may be present.
  • Tests may be reported as ‘abnormal’ even though CLL is not present.
  • Other conditions may mimic CLL.
  • Often follow-up tests are needed to clarify the results of tests.

Rule of thumb

As a general guide, it is important to be aware that the white count is most useful at the time of diagnosis to identify CLL. However, after diagnosis, changes in the CLL cells (i.e. the white cells increasing) are not as useful in monitoring CLL as changes in the normal cells (i.e. falling haemoglobin and/or platelets.)

The Immune System and CLL

Normally, your immune system helps your body to fight infections. However, in CLL patients, the immune system can be weakened, and there is an increased risk of more severe infections. Your doctor or nurse may want to talk to you about this, and it will help you to understand some of the terms that might be used.

Your immune system is a network of cells, tissues and organs, which protect your body against infection. Lymphocytes play an important part in this. There are lots of different types of lymphocyte, but the important ones to know about are T cells and B cells. These are types of white blood cells which fight infection. CLL affects B cells by allowing them to grow out of control, because they don’t ‘switch off’ and die when they should. They then crowd out other cells, like T cells, from the bone marrow. They may swamp your lymph nodes and spleen, making them enlarged. When this happens, your body can’t produce enough T cells, and the B cells that are produced are immature and don’t work properly.

One of the key measures of how your CLL may be progressing is to look at the number of white cells in your blood. This is usually done by examining the Absolute Lymphocyte Count (ALC), and you may hear this mentioned by your consultant.

Your lymphatic system

The lymphatic system is a network of thin tubes called lymph vessels, that run around your body. Connected to the vessels are lymph nodes or lymph glands. In CLL, these can become swollen as the abnormal lymphocytes build up there. The ones in your neck, armpits and groin are usually most affected and you may also experience swelling of your spleen.

Lymphatic system diagram
Lymphatic system Copy

Vaccinations

If you have CLL, you are more likely to pick up infections. This is because CLL weakens your immune system. It is important, therefore, to make sure you are vaccinated for a range of infections as soon after diagnosis as possible. You may also need regular booster vaccinations. Your doctor will advise you about this.

You must NOT receive vaccines, which contain live or attenuated (weakened) viruses. These include: yellow fever, oral polio, measles, smallpox, MMR and shingles.

Also note that babies who have received the oral polio vaccine should be avoided for at least a week, as they can pass on the live virus. Similarly, avoid children who have been recently vaccinated using a live virus.

It is hoped that a new non-live shingles vaccination (Shingrix) will be available in the future. More information on Shingles can be found here.

What vaccinations should I have?

Your healthcare team will advise you, but the most useful vaccinations you should consider are:

Flu Vaccine. This may not work for you as well as for people without CLL, but it should offer at least some protection. You should have this vaccine annually. Your close family should be vaccinated too as this will protect them from getting flu and from passing it on to you.

Pneumonia. For pneumococcus, modern practice for CLL patients is to give two vaccines some time apart. These are known as Prevnar-13 (child vaccine) and the usual Pneumovax-23. You should talk to your CLL consultant about having these. Your G.P. may not be aware of this. It is not necessary to have this vaccine annually. Your doctor will advise when you may need to renew it.

For Haemophilus influenza (HiB), another cause of pneumonia, vaccination is also recommended. The simplest way to protect against HiB is to have one dose of Menitorix (conjugate of HiB and MenC) which can be given at the same time as Prevenar-13. This also protects against Meninggococcus (MenC), a cause of meningitis.

Meningitis. See above for HiB.

For more information on vaccinations for CLL patients, see the video of the presentation given by Dr Helen Parry at the CLLS Birmingham Conference in 2018 here.

Intravenous Immunoglobulin Therapy (IVIg)

If you are getting lots of infections and your antibodies (infection-fighting proteins in your blood) are low, you may be offered IVIg as an infusion every 2 or 3 weeks to help boost your immune system. It can also be offered to some patients as self-administered injections to be done at home.

Blood infusion

If you need a blood infusion, it must be irradiated blood. For this reason, it is advisable to wear a wristband identifying that you are an “at risk leukaemia patient”, should you have to go to A & E.

Some Simple Tips to Avoid Infection

For CLL patients infection can be a real risk. However, you can reduce this by:

  • Avoiding people with an infection.
  • Avoiding crowded places where there is a risk of infection.
  • Washing your hands regularly.
  • Trying to keep good personal hygiene.
  • Taking care to keep your mouth clean. Consider using a mouthwash.
  • Avoiding foods that are not fresh or may be contaminated.
  • Drinking plenty of fluids.

Seek advice from your consultant or GP regarding a prescription for a course of antibiotics for you to have to hand in the event of getting an infection.