Most cases of chronic lymphocytic leukaemia (CLL) are detected during blood tests carried out for another reason.

But you should visit your GP if you have worrying symptoms of CLL, such as persistent tiredness, unusual bleeding or bruising, unexplained weight loss or night sweats.

Your GP may:

• ask about your symptoms and your medical and family history
• carry out a physical examination to check for problems such as swollen glands and a swollen spleen
• send off a blood sample for testing

If your GP thinks you could have CLL, you'll be referred to a hospital doctor called a haematologist, a specialist in blood disorders, for further tests.

Some of the tests you might have are outlined below.

Blood tests

The main test used to help diagnose CLL is a type of blood test called a full blood count.

This is where the number and appearance of the different blood cells in a sample of your blood are checked in a laboratory.

An abnormally high number of unusual white blood cells (lymphocytes) can be a sign of CLL. A detailed examination of these cells can usually confirm the diagnosis.

X-rays and scans

You may also have: 

• a chest X-ray
• an ultrasound scan of your tummy
• a CT scan

These tests can check for problems caused by CLL, such as swollen glands or a swollen spleen, and help rule out other possible causes of your symptoms.

Bone marrow biopsy

Sometimes the haematologist may recommend removing a sample of your bone marrow (bone marrow biopsy) so they can examine it under a microscope to check it for cancerous cells.

The sample is removed using a needle inserted into your hip bone. Local anaesthetic is normally used to numb the area where the needle is inserted, although you may experience some discomfort during the biopsy.

The procedure will last around 15 minutes and you should not need to stay in hospital overnight. You may have some bruising and discomfort for a few days afterwards.

Lymph node biopsy

In some cases, removing and examining a swollen lymph gland can help confirm a diagnosis of CLL. This is known as a lymph node biopsy.

The gland is removed during a minor operation carried out under either local or general anaesthetic, where you're asleep. You will not usually need to stay in hospital overnight.

After the operation, you'll be left with a small wound that will be closed with stitches.

Genetic tests

Tests may also be carried out on your blood and bone marrow samples to check for any unusual genes in the cancerous cells.

Identifying unusual genes in these cells can help your doctors decide how soon you should start treatment and which treatment is best for you.

Some treatments for CLL do not work as well in people with certain abnormal genes in the affected cells.

Treatment for chronic lymphocytic leukaemia (CLL) largely depends how far developed it is when it's diagnosed.

You may just need to be monitored at first if it's caught early on. Chemotherapy is the main treatment if it's more advanced.

Treatment can often help keep CLL under control for many years.

It may go away after treatment initially (known as remission), but will usually come back (relapse) a few months or years later and may need to be treated again.

Stages of CLL

Doctors use "stages" to describe how far CLL has developed and help them determine when it needs to be treated.

There are 3 main stages of CLL:

• stage A – you have enlarged lymph glands in fewer than 3 areas (such as your neck, armpit or groin) and a high white blood cell count
• stage B – you have enlarged lymph glands in 3 or more areas and a high white blood cell count
• stage C – you have enlarged lymph glands or an enlarged spleen, a high white blood cell count, and a low red blood cell or platelet count

Stage B and C CLL are usually treated straight away. Stage A generally only needs to be treated if it's getting worse quickly or starting to cause symptoms.

Monitoring early-stage CLL

Treatment may not be needed if you do not have any symptoms when you're diagnosed with CLL.

This is because:

• CLL often develops very slowly and may not cause symptoms for many years
• there's no benefit in starting treatment early
• treatment can cause significant side effects

In these cases, you'll normally just need regular visits to your doctor and blood tests to monitor the condition.

Treatment with chemotherapy will usually only be recommended if you develop symptoms or tests show that the condition is getting worse.

Chemotherapy for more advanced CLL

Many people with CLL will eventually need to have chemotherapy. This involves taking medication to keep the cancer under control.

There are a number of different medicines for CLL, but most people will take 3 main medications in treatment cycles lasting 28 days.

These medicines are:

• fludarabine – a chemotherapy medicine usually taken as a tablet for 3 to 5 days at the start of each treatment cycle
• cyclophosphamide – a chemotherapy medicine also usually taken as a tablet for 3 to 5 days at the start of each treatment cycle
• rituximab – a targeted cancer drug given into a vein over the course of a few hours (intravenous infusion) at the start of each treatment cycle

Fludarabine and cyclophosphamide can usually be taken at home. Rituximab is given in hospital, and sometimes you may need to stay in hospital overnight.

A number of different medicines can also be tried if you cannot have these medicines, you have tried them but they did not work, or your CLL has come back after treatment.

These include bendamustine, chlorambucil, ibrutinib, idelalisib, obinutuzumab, ofatumumab and prednisolone (a steroid medication).

Side effects of treatment

The medicines used to treat CLL can cause some significant side effects, including:

• persistent tiredness
• feeling sick
• an increased risk of infections
• easy bruising or bleeding
• anaemia – shortness of breath, weakness and pale skin
• hair loss or thinning
• an irregular heartbeat
• an allergic reaction

Most side effects will pass once treatment stops. Let your care team know if you experience any side effects, as there are some treatments that can help.

Find out more about the side effects of chemotherapy

Stem cell or bone marrow transplants

Stem cell or bone marrow transplants are sometimes used to try to get rid of CLL completely, or control it for longer periods.

Stem cells are cells produced by the spongy material found in the centre of some bones (bone marrow) and can turn into different types of blood cells, including white blood cells.

A stem cell transplant involves:

• having high-dose chemotherapy and radiotherapy to destroy the cancerous cells in your body
• removing stem cells from the blood or bone marrow of a donor – this will ideally be someone closely related to you, such as a brother or sister
• transplanting the donor stem cells directly into 1 of your veins

This is the only potential cure for CLL, but it's not done very often as it's an intensive treatment and many people with CLL are older and not well enough for the benefits to outweigh the risks.

The initial treatment with chemotherapy and radiotherapy can place a significant strain on your body and cause troublesome side effects.

There's also a risk of serious problems after the transplant, such as graft versus host disease. This is where the transplanted cells attack the other cells in your body.

Read more about what happens during a stem cell transplant and the risks of a stem cell transplant.

Other treatments for CLL

There are also a number of other treatments that are sometimes used to help treat some of the problems caused by CLL, particularly if you cannot have chemotherapy or it does not work.

These include:

• radiotherapy to shrink enlarged lymph glands or a swollen spleen
• surgery to remove a swollen spleen
• antibiotics, antifungals and antiviral medications to help reduce your risk of picking up an infection during treatment
• blood transfusions to provide more red blood cells and platelets (clotting cells) if you experience severe anaemia or problems with bleeding and bruising
• immunoglobulin replacement therapy – a transfusion of antibodies taken from donated blood that can help prevent infections
• injections of medication called granulocyte-colony stimulating factor (G-CSF) to help boost the number of white blood cells

You may also need additional treatment for any complications of CLL that develop.

Deciding against treatment

As many of the treatments for CLL can have unpleasant side effects that may affect your quality of life, you may decide against having a particular type of treatment.

This is entirely your decision and your treatment team will respect any decision you make.

You will not be rushed into deciding about your treatment, and you can talk to your doctor, partner, family and friends before making a decision.

Pain relief and nursing care will still be available as and when you need it.

Clinical trials for CLL

Several clinical trials are currently being conducted in the UK to try to find the best way of treating CLL.

These are studies that use new and experimental techniques to see how well they work in treating, and possibly curing, the condition.

If you're interested in taking part in a clinical trial, your care team can tell you if there are any running in your area, and explain the benefits and risks involved.

Find out more about clinical trials or search the UK Clinical Trials Gateway website for details of clinical trials for chronic lymphocytic leukaemia currently in progress across the UK.

Chronic lymphocytic leukaemia (CLL) can sometimes cause a number of further complications.

Some of the main problems people with the condition may experience are outlined below.

Infections

People with CLL usually have a weakened immune system and are more vulnerable to infections because they have a lack of healthy infection-fighting white blood cells.

Treatment with chemotherapy can also further weaken the immune system.

If you have CLL, it's a good idea to:

• report any possible symptoms of an infection to your GP or care team immediately – things to look out for include a high temperature, aching muscles, diarrhoea or headaches
• ensure your vaccinations are up-to-date – speak to your GP or care team for advice about any additional vaccines you might need, as some are not safe if you have a weak immune system
• avoid close contact with anyone who has an infection – even if it's an infection to which you were previously immune, such as chickenpox

You may also be prescribed regular doses of medications like antibiotics to help reduce the risk of infection.

Richter's syndrome

In rare cases, CLL can change to become very similar to an aggressive form of non-Hodgkin lymphoma. This is called Richter's transformation or Richter's syndrome.

Symptoms of Richter's syndrome include:

• sudden swelling of your lymph glands
• a high temperature
• night sweats
• unintentional weight loss
• tummy pain

Richter syndrome is usually treated with a combination of chemotherapy and other powerful medicines.

The Cancer Research UK website has more information on Richter's syndrome.

Autoimmune haemolytic anaemia

Another rare complication, CLL can develop a condition called autoimmune haemolytic anaemia.

This is where the immune system starts to attack and destroy red blood cells.

It can cause severe anaemia, making you feel breathless and easily tired.

It's usually treated with steroid medication.

Psychological effects

Being diagnosed with CLL can be very distressing and difficult to take in at first, particularly as it cannot necessarily be cured and you may be advised to wait for it to get worse before starting treatment.

Having to wait years to see how the condition develops can also be very stressful and make you feel anxious or depressed.

Speak to your GP or care team if you're finding it difficult to cope.

You may also find it useful to talk to other people who are living with leukaemia.

Your GP or care team will be able to provide you with the details of support groups in your area.

Macmillan Cancer Support provides an excellent level of help and support. Their helpline number is 0808 808 00 00, Monday to Friday, 9am to 8pm.