Statistics and outlook for chronic lymphocytic leukaemia (CLL)
This page is about statistics and what they can tell us about the outlook for people with chronic lymphocytic leukaemia. There is information about
Statistics and outlook for chronic lymphocytic leukaemia (CLL)
Outlook means your chances of getting better. Your doctor may call this your prognosis. The outcome of treatment for chronic leukaemia depends on a number of different factors. This includes the type of chronic leukaemia you have, how advanced it is when it is diagnosed and how well it responds to chemotherapy treatment.
We have quite detailed information about the likely outcome of CLL. The statistics we use are taken from a variety of sources, including the opinions and experience of the experts who check every section of CancerHelp UK. They are intended as a general guide only. For the more complete picture in your case, you’d have to speak to your own specialist.
We include statistics because people ask for them, but not everyone wishes to read this type of information. Remember you can skip this page if you don't want to read it, you can always come back to it.
How reliable are cancer statistics?
No statistics can tell you what will happen to you. The statistics cannot tell you about the different treatments people may have had, or how that treatment may have affected their prognosis. There are many individual factors that will affect your treatment and your outlook.
You can view and print the quick guides for all the pages in the Treating CLL section.
This page contains quite detailed information about the likely outcome of CLL. We have included it because many people have asked us for this. But not everyone who is diagnosed with a cancer wants to read this type of information. If you are not sure whether you want to know at the moment or not, perhaps you might like to skip this page for now. You can always come back to it.
Please note: there are no national statistics available for the different stages of cancer or treatments that people may have had. The statistics given here are pulled together from a variety of sources, including the opinions and experience of the experts that check each section of CancerHelp UK. We provide statistics because people ask us for them. But they are only meant to be a general guide and cannot be regarded as a prediction of the outlook for any individual person.
CancerHelp UK has a section explaining more about the different types of cancer statistics. Unless you are very familiar with cancer statistics, you may find it helpful to read this section before you read the information below.
Remember - statistics are averages based on large numbers of patients. They cannot predict exactly what will happen to you. No two patients are exactly alike and the effectiveness of treatment also varies from one person to another.
You should feel free to ask your doctor about your prognosis, but not even your cancer specialist can tell you for sure what will happen. You may hear your doctor use the term '5 year survival'. It does not mean you will only live 5 years. Doctors follow up what happens to people for 5 years after treatment in any research study. They use 5 years as a standard time, so that the results of different research studies can be compared with each other.
CLL is the most common type of leukaemia. Just over 2,300 cases were diagnosed in 1999. This is about 35 out of every 100 (35%) cases of leukaemia.
The outcome of treatment for CLL depends on a number of different factors. This includes the type of CLL you have, how advanced it is when it is diagnosed and how well it responds to chemotherapy treatment. You will need to talk this through with your own specialist.
Not all types of chronic leukaemia are curable. But they often develop slowly and are kept under control for many years with treatment. You may hear these periods called 'remission'.
Remission is when the leukaemia is not active - you don't have symptoms and it doesn't show up in your blood samples. It can be possible to achieve a second remission with more chemotherapy if a chronic leukaemia comes back after treatment.
For all stages of CLL, on average 44 out of 100 men (44%) and 52 out of 100 women (52%) will live for at least 5 years after being diagnosed. But your own outlook depends on the stage you are in when you are diagnosed. Chronic lymphocytic leukaemia has 3 stages, called stage A, B and C. In the earliest stage (A), survival time is generally 10 years or more. For people diagnosed in the middle stage (B), the survival time is generally from around 5 to 8 years. For people diagnosed in the most advanced stage (C), the survival time is generally around 1 to 3 years.
Doctors have been aware for some time that stage A CLL seems to behave in different ways. In some people, it develops much more slowly than in others. But doctors can't tell in advance who has the very slow type of CLL and who doesn't. For some years now, researchers have been working on ways to do this. Monitoring the numbers of a person's lymphocytes ( a type of white blood cell) with blood tests has shown that if the numbers of lymphocytes goes up quickly, the CLL is likely to develop (progress) more quickly. If your lymphocyte count takes longer than 12 months to double, your CLL is likely to have a better outlook.
Doctors and researchers have also been working on tests they can carry out on your CLL cells, to identify genetic changes that can be used as 'prognostic factors', which may predict which treatment will be most effective. One 'prognostic factor' is a gene found in CLL cells, called the VH gene. There are two different types of this gene. Doctors call the different types 'mutated' or 'unmutated' VH genes. In this case, 'mutated' doesn't mean abnormal. It just tells the specialist more about the B cells that your CLL developed from.
People with the mutated type of VH gene seem more likely to have very slowly developing CLL. Their leukaemia tends to stay in the earliest stage for many years, so they tend to live longer. Some research papers have recorded survival times for people with mutated VH gene CLL of 20 years and more. Researchers are investigating blood tests that can see which type of VH gene you have. In future, it is possible that a VH gene test may be able to pick out people who have CLL that is likely to be very slow to develop.
Another 'prognostic factor' being looked at is whether the leukaemia cells produce a protein called CD38. Researchers think people with CD38 positive CLL may have a worse outlook. But CD38 may not be as reliable a test for prognosis as VH mutation. Whether CD38 is produced or not seems to sometimes change during the course of your CLL, so the result may depend on when the test is carried out.
Scientists have also developed genetic tests for chronic leukaemia cells. Some of the changes (mutations) they have found seem to be linked to a worse outlook, including loss of parts of the chromosomes called 11q and 17p. For example, the p53 gene may be missing from chromosome 17p. Treatment choices can now be made according to the genetic changes that your CLL has.
Work on all these tests will carry on. As well as giving patients more realistic information when they are diagnosed, they will help doctors to decide how best to treat CLL in the future. For example, if you have a very slowly growing type of CLL, you are less likely to need intensive treatment.
No statistics can tell you what will happen to you. Your cancer is unique. For example, the same type of leukaemia can grow at different rates in different people.
The statistics are not detailed enough to tell you about the different treatments people may have had. And how that treatment may have affected their prognosis. Many individual factors will affect your treatment and prognosis.
People treated at hospitals where clinical trials are taking place tend to do better. This is almost certainly because that is where the most expertise is concentrated - research is more likely to take place in specialist centres. For people in the trials, it may be partly to do with having a closer eye kept on them by their doctors than if they were not in a trial. An example is that they may have more scans and blood tests. There is more about understanding clinical trials clinical trials in CancerHelp UK. To search our clinical trials database for trials recruiting for chronic leukaemia. Pick 'leukaemia - chronic' from the drop down menu of cancer types.
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