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 how quickly or slowly the leukaemia may develop and how long you may live. Doctors call this prognosis. The outcome of treatment for chronic lymphocytic leukaemia depends on a number of different factors. This includes the stage of chronic leukaemia you have, how advanced it is when it is diagnosed, and how well it responds to 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 this website. They are intended as a general guide only. For a more complete picture in your case, you need to speak to your own specialist.
We include statistics because people ask for them, but not everyone wants 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.
There is a section explaining the different types of cancer statistics. Unless you are very familiar with medical statistics, it might help to read this before you read the statistics below.
Remember that 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 how well treatment works 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.
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 this website. 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.
CLL is the most common type of leukaemia. Around 3,200 people are diagnosed with CLL in the UK each year. It mainly affects older people. 75 out of 100 people with CLL (75%) are diagnosed when they are over the age of 60. It is more common in men than women.
Chronic lymphocytic leukaemia is not usually curable. But it often develops very slowly and treatment can keep it under control for many years.
The time when the leukaemia is controlled by treatment and is not active is called remission. Remission means that you don't have symptoms and the CLL doesn't show up in your blood samples. CLL is likely to come back again, some time after your first lot of treatment. But it can then be possible to get it into a second remission, with more chemotherapy or other treatment.
For all stages of CLL, more than 40 out of 100 men (40%) and more than 50 out of every 100 women (50%) will survive for 5 years or more after being diagnosed. But your own outlook depends on your stage when you are diagnosed.
CLL has 3 stages, called stage A, B and C. In the earliest stage (A), people generally survive for 10 years or more after diagnosis. People diagnosed in the middle stage (B) generally survive for around 5 to 8 years. People diagnosed in the most advanced stage (C) usually survive for around 1 to 3 years after they are diagnosed.
Remember – everyone is individual and these figures can't predict exactly what will happen in your particular case.
The outcome of treatment for CLL depends on a number of different factors. This includes the stage 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.
Research into predicting CLL outlook
There is research going on looking at ways to help doctors predict CLL outlook better. As well as giving patients an idea of their outlook 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.
Stage A CLL
Doctors and researchers have been aware for a while that stage A CLL develops much more slowly in some people than in others. But we 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. Using blood tests they have monitored the numbers of a person's lymphocytes. The monitoring has shown that if the numbers of lymphocytes goes up quickly the CLL is likely to develop more quickly. If your lymphocyte count takes longer than 12 months to double your CLL is likely to have a better outlook.
Gene changes in CLL cells
Doctors and researchers are also working on CLL cells. They want to identify any particular genetic changes. Some genetic changes may help doctors to predict how quickly the CLL will develop. One gene found in CLL cells is called the VH gene. There are two different types of this gene – mutated and unmutated. 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 that many people with mutated VH gene CLL live for 20 years or more.
Researchers are investigating blood tests that can show 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. Some of the changes (mutations) researchers have found seem to be linked to a worse outlook.
If tests find that your CLL cells have a particular gene change, it can give your doctors a guide to which treatment is the most appropriate for you.
Proteins on the CLL cells
Some leukaemia cells produce particular proteins. Researchers think that people may have a worse outlook if their CLL cells have a protein called CD38 (this is called CD38 positive CLL). But CD38 may not be as reliable a test to predict outlook as VH gene 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.
Some people with CLL may have a mutation of a gene called TP53. TP53 is a gene that normally controls when a cell divides. Unfortunately this type of CLL does not respond as well to treatment and the outlook is not as good. If you have this type of CLL your specialist may offer you a different treatment to the standard one.
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. They also don't tell us how that treatment may have affected their prognosis. Many individual factors will affect your treatment and prognosis.
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