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Statistics and outlook for hairy cell leukaemia

Men and women discussing hairy cell leukaemia

This page is about statistics and what they can tell us about the outlook for people with hairy cell leukaemia. There is information about

 

A quick guide to what's on this page

Statistics and prognosis of hairy cell leukaemia

Outlook means your chances of getting better. Your doctor may call this your prognosis. The outlook for hairy cell leukaemia depends on a number of different factors including how advanced the HCL is when you are diagnosed, and how well it responds to treatment. For detailed information, you will need to talk this through with your own specialist.

Hairy cell leukaemia is usually a condition that develops slowly and can be kept under control for many years with treatment. You may hear these periods called remission. Remission is when the disease 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 the hairy cell leukaemia comes back (relapses).

Further down this page, we have more information about the likely outcome of hairy cell leukaemia. The statistics are intended as a general guide only. Statistics for HCL are harder to estimate than for other, less rare cancers.

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.

 

CR PDF Icon You can view and print the quick guides for all the pages in the Treating hairy cell leukaemia section.

 

About the information on this page

This page contains quite detailed information about the likely outcome of hairy cell leukaemia (HCL). We have included it because many people ask us for this type of information. But not everyone who is diagnosed with a cancer wants to read it. If you are not sure whether you want to know at the moment or not, then perhaps you might like to skip this page for now. You can always come back to it.

Please note that no national statistics are available for different stages of cancer or treatments that people may have had. The statistics we present here are pulled together from a variety of different sources, including the opinions and experience of the experts who check each section of Cancer Research UK's patient information. We provide statistics because people ask us for them. But they are only intended as a general guide and cannot be used to predict the outcome in your particular case.

 

Cancer statistics in general

There is a section explaining the different types of cancer statistics in the cancer statistics section. Unless you are very familiar with medical statistics, you may find it helpful to read this before you read the information 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 response to treatment also varies from one person to another.

5 year survival

You should feel free to ask your doctor about your prognosis, but not even your doctor 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. It relates to the number of people in research who were still alive 5 years after their diagnosis. Doctors follow what happens to people for 5 years after treatment in any cancer research study. Because HCL tends to be a chronic disease, you may hear your doctor talk about 10 year survival as well.

 

The outlook for HCL

The outcome of treatment for hairy cell leukaemia depends on a number of different factors, including

  • How advanced the HCL is when you are diagnosed
  • How well it responds to treatment

These days, doctors think that most people with HCL can expect to have a normal length of life. For detailed information, you will need to talk this through with your own specialist. Hairy cell leukaemia is usually a condition that develops slowly and can be kept under control for many years with treatment. You may hear these periods called remission. Remission is when the disease 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 treatment if the hairy cell leukaemia comes back (relapses). 

Statistics for HCL are harder to estimate than for other, less rare cancers. Because HCL is so uncommon, the statistics have to be based on a small number of people. But, overall, at least 96 out of every 100 people diagnosed with hairy cell leukaemia (96%) will live for at least 10 years after they are diagnosed. 

Doctors also look at people whose disease has come back (relapsed) and need to have more treatment. This helps them to look at which treatment is best. At 5 years after diagnosis, HCL will have come back in about 24 to 33 out of every 100 people (24 to 33%). And 10 years after diagnosis, 42 to 48 out of every 100 people (42 to 48%) will have had recurrence of their disease.

People who have a complete response to treatment do better than people who have a partial response. In HCL a complete response is when all signs of the leukaemia have disappeared. A partial response means there will still be some abnormal leukaemic cells or other signs of the leukaemia.

If your disease comes back after treatment your doctor will either give you the same treatment as you had before, or a different treatment. The choice depends on how long your remission was. If you had a long remission, it is worth trying the same treatment again. If not, your specialist is more likely to want to try another treatment.

There is information about treating HCL that has come back in this section.

 

Reliability of cancer statistics

No statistics can tell you what will happen to you. Your leukaemia is unique. The statistics available are not detailed enough to 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 determine your treatment and prognosis.

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Updated: 19 September 2013