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Survival statistics for hairy cell leukaemia

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Survival statistics for 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.

 

Hairy cell leukaemia (HCL) survival

Find out about survival for hairy cell leukaemia (HCL).

People ask us for this information but not everyone with cancer wants to read it. So, if you aren’t sure whether you want to know at the moment, you can come back to it later.

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. They can’t tell you what will happen in your individual case.

No one can tell you exactly how long you’ll live with HCL. It depends on your individual situation, treatment and level of fitness.

Your doctor can give you more information about your own outlook (prognosis). Or you can talk to the Cancer Research UK nurses on freephone 0808 800 4040, from 9 to 5, Monday to Friday.

 

Survival statistics for HCL

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. 

No UK-wide statistics are available for HCL survival. Statistics are available from one area of England. 

Generally for people with HCL,

  • around 90 out of every 100 (90%) will survive their leukaemia for 5 years or more after they are diagnosed 

HCL usually 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). 

A British study published in 2005 looked at patients with HCL and their response to treatment and relapse rate. The researchers found that

  • at 5 years after diagnosis, HCL came back in about 24 to 33 out of every 100 people (24 to 33%)
  • at 10 years after diagnosis, HCL came back in 42 to 48 out of every 100 people (42 to 48%)

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.

Read more about treating HCL that has come back.

 

What affects survival

Having a very low red blood cell (haemaglobin), white blood cell (neutrophil) or platelet count, may affect your outlook. Read more about these blood tests

If you have swollen lymph nodes in your tummy (abdomen), this may also affect your likely survival. The doctors call this lymphadenopathy.

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 leukaemia cells or other signs of the leukaemia.

 

About these statistics

The term 5 year survival doesn't mean you will only live for 5 years. It relates to the number of people who live 5 years or more after their diagnosis of leukaemia. Many people live much longer than 5 years.

On this page, the HCL 5 year survival statistics are for relative survival. Relative survival takes into account that some people will die of causes other than leukaemia. This gives a more accurate picture of leukaemia survival.

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Updated: 2 April 2015