Living With Leukaemia

Leukaemia is cancer of the white blood cells. Chronic leukaemia tends to progress slowly over the course of many years.

Chronic leukaemia is classified according to the type of white blood cells affected by cancer.

This topic focuses on chronic lymphocytic leukaemia, which affects types of white blood cells called lymphocytes.

Symptoms of chronic lymphocytic leukaemia

In its early stages, chronic lymphocytic leukaemia doesn't usually cause any noticeable symptoms. As the condition develops, symptoms can include:

• repeated infections that occur over a short space of time 
• tiredness due to a lack of red blood cells (anaemia) 
• unusual bleeding and bruising 
• fever 
• night sweats 
• bone pain 
• weight loss 
• swollen spleen 
• swollen lymph nodes (glands) 

What happens in chronic leukaemia

Bone marrow – the spongy material found inside bones – contains a specialised type of cell called stem cells. 

These stem cells can develop into any of the three types of blood cell:

• red blood cells – which carry oxygen around the body 
• white blood cells – which help fight infection 
• platelets – which help stop bleeding 

In leukaemia, the stem cells start overproducing white blood cells that aren't fully developed. In chronic lymphocytic leukaemia, these are lymphocytes. 

This overproduction of lymphocytes is at the expense of the other blood cells, and it's this lack of red blood cells and platelets that can cause symptoms of anaemia such as tiredness, as well as increasing the likelihood of excessive bleeding.

In some people with chronic lymphocytic leukaemia, the body’s immune system can start attacking red bloods and cause a different type of anaemia called haemolytic anaemia. This may require different treatment.

The white blood cells are also not properly formed, and these immature lymphocytes are much less effective at fighting bacteria and viruses, making you more vulnerable to infection.

Causes of chronic lymphocytic leukaemia

In most cases, it's not known what causes leukaemia. However, there are some risk factors that may increase your chances of developing chronic leukaemia.

Known risk factors for chronic leukaemia include:

• having a family history of the condition 
• being of European, American or Australian origin (it's rare in people from China, Japan and South East Asia) 
• having certain medical conditions, such as pnenomia (chest infection) sinusitis or shingles.
• being male  

Diagnosing chronic lymphocytic leukaemia

Most cases of chronic lymphocytic leukaemia are discovered during unrelated routine blood tests.

However, visit your GP if you have the typical signs and symptoms of leukaemia (see above). They will ask you about your symptoms and your medical and family history.

Your GP will also carry out a physical examination to check for swollen glands, a swollen spleen and any signs of abnormal bleeding. You may also be asked to have a blood test.

If your GP suspects leukaemia, they'll refer you to a haematologist (a doctor who specialises in conditions that affect the blood). You'll have a full blood count, where the number of different types of blood cell in a sample are counted.

You may also need to have some other tests, such as a chest X-ray, to rule out other possible causes of your symptoms, and an ultrasound scan or a computerised tomography (CT) scan to check your organs.

Treating chronic lymphocytic leukaemia

As most people diagnosed with chronic lymphocytic leukaemia don't have symptoms, immediate treatment isn't usually recommended.

Some people can live for years or decades with chronic lymphocytic leukaemia without developing symptoms or needing treatment.

This is because most treatment programmes involve chemotherapy, which has associated side effects. In such cases, a policy of  "watchful waiting" is usually recommended, which involves regular visits to your doctor and blood tests so that your condition can be closely monitored.

If treatment is required, chemotherapy will usually be recommended. Radiotherapy may also be needed to shrink swollen lymph nodes.

Treatment can't cure chronic lymphocytic leukaemia completely, but it can slow its progression and lead to remission (periods where there are no signs or symptoms).

Complications of chronic lymphocytic leukaemia

One of the main complications of chronic lymphocytic leukaemia is increased vulnerability to infection. 

This is because your immune system will be weakened due to a reduced number of healthy, infection-fighting white blood cells. Having chemotherapy treatment will also weaken your immune system.

Due to the risk of infection, you should have a flu vaccination and a pneumococcal vaccination. Regular doses of antibiotics may also be recommended.

Around 10% of people with chronic lymphocytic leukaemia will develop anaemia due to the breakdown of red blood cells. This form of anaemia is called autoimmune haemolytic anaemia and can be severe, causing fatigue and breathlessness. Steroids are often used to treat autoimmune haemolysis.

Living with chronic lymphocytic leukaemia

Being diagnosed with chronic lymphocytic leukaemia can be difficult to come to terms with. It can affect you both physically and emotionally.

In the early stages, you may not have any symptoms and your quality of life may be unaffected.

If the condition is more advanced, or if you need treatment, you may lack energy and feel very tired all the time, particularly after treatment.

Your treatment programme may also cause side effects. For example, some types of chemotherapy may make your skin more sensitive to light, which means you'll need to take extra care in the sun.

If you're diagnosed with cancer, you may experience a range of emotions. You may feel shocked, angry, confused, upset or frightened.

There's no right or wrong way to deal with a cancer diagnosis, but it's very important to talk about how you're feeling with a loved one or a healthcare professional, such as your specialist or a trained counsellor.

The Cancer UK website also has some useful information and advice about coping with chronic lymphocytic leukaemia and emotions and cancer.

Warning signs of acute leukaemia

Symptoms of acute lymphoblastic leukaemia usually begin slowly before rapidly getting severe as the number of immature white blood cells in your blood increases (see below for an explanation of this). Symptoms include:

• pale skin 
• tiredness 
• breathlessness 
• having repeated infections over a short space of time 
• unusual and frequent bleeding 

What happens in acute leukaemia

All of the blood cells in the body are produced by bone marrow – a spongy material found inside bones. 

Bone marrow produces specialised cells called stem cells which have the ability to develop into three important types of blood cells:

• red blood cells, which carry oxygen around the body 
• white blood cells, which help fight infection 
• platelets, which help stop bleeding 

Usually the bone marrow produces stem cells which are allowed to fully develop before being released into the blood. But in acute leukaemia, bone marrow starts releasing large numbers of immature white blood cells known as blast cells.

As the number of blast cells increases there is a drop in the number of red blood cells and platelet cells. This drop causes the symptoms of anaemia, such as tiredness, and increases the risk of excessive bleeding.

Also, blast cells are less effective than mature white blood cells at fighting bacteria and viruses, making you more vulnerable to infection.

How common is acute lymphoblastic leukaemia?

Around 8,600 people are diagnosed with leukaemia each year in the UK. In 2011, 654 people were diagnosed with acute lymphoblastic leukaemia.

Despite being uncommon overall, acute lymphoblastic leukaemia is the most common type of cancer to affect children. Approximately one in every 2,000 children will develop it. About 85% of cases occur in children aged under 15, mostly between the ages of two and five years old. 

The cause or causes of acute leukaemia are uncertain, but known risk factors include:

• exposure to high levels of radiation 
• exposure to benzene, a chemical used in manufacturing that is also found in cigarettes 

Outlook

The outlook for children with acute lymphoblastic leukaemia is usually good. Almost all children will achieve a remission (a period of time where they are free from symptoms) from their symptoms, and 85% will be completely cured. 

The outlook for adults with acute lymphoblastic leukaemia is less promising as only 40% of people with the condition will be completely cured.

Treatments for acute lymphoblastic leukaemia usually involve a combination of chemotherapy and radiotherapy. In some cases, a bone marrow transplant may also be needed to achieve a cure.

If a cure is not possible, there is a risk that the lack of healthy blood cells can make the person extremely vulnerable to life-threatening infections (due to the lack of white blood cells) or uncontrolled and serious bleeding (due to the lack of platelets).