CLL (chronic lymphocytic leukaemia) symptoms and diagnosis

• If you don’t need treatment, you will have regular tests to check whether the CLL is stable or progressing.
• If you need to start treatment, you will have tests to help your hospital team decide which treatment will work best for you and monitor how well it’s going.
• You may have scans to check on your symptoms.
• You may also have tests to look at your prognosis – what’s likely to happen in the future.

Having tests can be stressful. It’s normal to feel nervous, whether it’s about the procedure or the results or both. Ask your hospital team or GP to explain what each test procedure involves, what the test is looking for, and how long the results are likely to take.

Our free CLL booklet has information about managing anxiety while you’re waiting for test results.

If you’re on watch and wait for CLL (you’ve never had treatment, or have had treatment and gone into remission), you’ll have blood tests at regular intervals. Samples of your blood will be taken and tested in a laboratory.

You’re likely to have these tests only if you’re having treatment for CLL, or if your hospital team needs to find out if it’s time to start.

People with CLL may have a bone marrow biopsy to check for abnormalities in the bone marrow – the spongy tissue inside some of your bones where blood cells are made.

For this test, a needle is used to take a small sample of bone marrow from the back of your pelvis (the ring of bones between your waist and the top of your legs). Your doctor will then look at the bone marrow sample under a microscope.

You may have a bone marrow biopsy if your hospital team thinks it will give them useful information about the CLL or its treatment.

This measures the level of a particular protein called beta-2 microglobulin or B2M in your body. Your hospital team may use this test to find out more about the stage of the CLL and your prognosis, or to monitor the progress of your treatment. This test is done using a blood sample and sometimes a urine sample.

Your hospital team may order scans to investigate certain symptoms or find out how the CLL is progressing, but they’re not done routinely.

Here’s why you may have certain scans after a CLL diagnosis:

• X-rays can be used to check if you have a chest infection.
• CT scans can show which parts of the body are affected by the CLL. You may have a CT scan before and after treatment, depending on your symptoms.
• PET scans can help your hospital team check if the CLL is developing into a different type of blood cancer. This is rare.

We have more information about scans and how they’re done.

You may have genetic tests look for changes (abnormalities or mutations) in your blood cells. To understand why you might have these tests, it may help to check what you know about DNA, chromosomes and genes:

• DNA (deoxyribonucleic acid) DNA is the genetic code that controls how the cells in our body grow and develop.
• Chromosomes DNA is packaged up in structures inside cells called chromosomes. Almost all of our cells, including most blood cells, contain DNA arranged in 23 pairs of chromosomes.
• Genes These are short sections of DNA which control specific functions of cells. Every human has around 20,000 genes.

Cancer develops when genes controlling cell growth are damaged. This damage means that the cancer cells grow faster than normal cells.

Genetic damage is important in the development of CLL, although we usually don’t know why this has happened in an individual person. Here are some of the things we know can lead to DNA damage:

• Chance We all make hundreds of billions of blood cells every day and genes can be damaged or mutated (changed) whenever we make new cells.
• Environment Mutations can also happen if we’re exposed to things which damage DNA, such as chemicals.
• Inherited abnormalities Genetic abnormalities can also be inherited, although this only happens in a small number of people with CLL.

There are several different genetic abnormalities that can lead to CLL. This is one of the reasons why CLL behaves differently in different people. These genetic abnormalities can also influence how the CLL responds to treatment.

Genetic tests can be done on samples of your blood or bone marrow to find out which genetic abnormalities are present in the CLL cells. You’ll usually have these tests at the point where you need treatment.

FISH tests and DNA sequencing are genetic tests that are commonly done at this stage:

Changes in certain genes can affect how well treatment works, and what treatment you will be offered:

Our booklet on CLL covers all the essentials about what happens after a CLL diagnosis. It's free for you, your family and friends, so order as many copies as you need.