Diagnosis

Updated 11.09.2024

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

Links to relevant sections:

The Full Blood Count

Staging

What’s the outlook?

What do my blood results mean?

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

The Immune System and CLL

Vaccinations

What vaccinations should I have?

Intravenous Immunoglobulin Therapy (IVIg)

Blood transfusion

Some Simple Tips to Avoid Infection

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. White blood cells consist mostly of neutrophils and lymphocytes. There are small numbers of three other types of 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.

There are also things you can do to help yourself:

It’s very important to keep up to date with all your vaccinations (see our Vaccination Guide here)
Look after your mental health. Have a look at our Support Act website here
Always keep your appointments with your medical team. They need to monitor your CLL, and it will help you to know where you are with your CLL.
Try to learn as much about CLL as you can, as this will help with your discussions with your medical team. Take your time – there’s a lot to learn.
Try to keep as fit as possible. Research has shown that it can help with some of the symptoms of CLL, and is good for general wellbeing.

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 Cells	Red Cells	Platelets
Medical name:	Neutrophils	Erythrocytes	Platelets
	Lymphocytes		Thrombocytes
What they do:	Fight infection	Carry oxygen	Stop bleeding
Low counts are called:	Neutropenia	Anaemia	Thrombocytopenia
Symptoms	Infections	Tiredness, Breathlessness	Bruising, 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 cells	Haemoglobin*	Neutrophil	Platelets
	(10⁹/1)	(10⁹/1)	(g/dl)	(10⁹/1)	(10⁹/1)
Adult Male	4.0 to 11.0	4.5 to 6.5	13.0 to 18.0	2.0 to 7.5	150 to 440
Adult Female	4.0 to 11.0	3.8 to 5.0	11.5 to 16.5	2.0 to 7.5	150 to 440

Note that these counts must be assessed by a doctor. They will be different for patients of African-Caribbean decent.

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

With CLL, total white cell counts tends 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.

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 including the nasal flu vaccine.

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 or 15 (child vaccine) which should be given at least 2 months before 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.

Shingles. The only vaccination currently available for people with blood cancer is the non-live vaccine Shingrix. Until September 2023 it can be given only to people aged 70 – 79, but from September it will be available from age 50, with no upper limit. You can find more about shingles here.

RSV (Respiratory Syncytial Virus). RSV is a common cause of coughs and colds. It usually gets better by itself, but it can be serious for older adults, particularly those with a weakened immune system. This is a new vaccination, currently for people aged 75 to 79, and will be available from 1 September 2024. You should be contacted by your GP for this.

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 7 days or so to help boost your immune system. Immunoglobulin can also be offered to some patients as self-administered injections under the skin at home. This is usually given every 1 to 2 weeks.

Blood transfusion

If you become significantly anaemic, either because of your CLL or during treatment, you may require one or more blood transfusions. If you’ve been treated with certain chemotherapy drugs, such as fludarabine, bendamustine and alemtuzumab (Campath) and need a transfusion, you must receive irradiated blood products. Note that this applies to platelet transfusions also. The transfusion of non-irradiated blood is not a problem for CLL patients who haven’t had these drugs.
In addition, patients undergoing peripheral blood lymphocyte collections for future CAR-T cell re-infusion should receive irradiated cellular blood components for 7 days prior to and during the harvest, to prevent the collection of viable allogeneic (donor) T lymphocytes. Irradiated blood components should continue to be used until 3 months following CAR-T cell infusion unless conditioning, disease or previous treatment determine indefinite duration, for example, previous purine analogue treatment (Fludarabine or Bendamustine).’

For this reason, if you fall into this category, it is advisable to wear a wristband identifying you as an at-risk leukaemia patient who needs irradiated blood products. Your consultant or Clinical Nurse Specialist should give you a warning card that you should always carry with you.

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, including family.
Avoiding crowded places where there is a risk of infection, especially in winter months.
Washing your hands regularly.
Closing the toilet lid before flushing.
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.

Of course, there is a balance to be found between trying to live a normal life and taking precautions, and each person will decide for themselves what level they are prepared to take.

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.