Hairy cell leukaemia usually develops slowly. It can be kept under control for many years with treatment. Doctors think that most people can expect to have a normal length of life. For detailed information, you will need to talk this through with your own specialist.
Survival depends on many factors, so no one can tell you exactly how long you’ll live. It depends on your individual condition, treatment and level of fitness.
Statistics for this type of leukaemia are harder to estimate than for other, more common leukaemias.
Some of the statistics have to be based on a small number of people. Remember, they can't tell you what will happen in your individual case.
Your doctor can give you more information about your own outlook (prognosis).
Survival statistics for hairy cell leukaemia
No UK-wide statistics are available for hairy cell leukaemia survival. Statistics are available from one area of England.
Generally for people with hairy cell leukaemia:
- around 95 out of every 100 (around 95%) will survive their leukaemia for 5 years or more after they are diagnosed
These 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.
Doctors use the International Classification of Diseases for Oncology, third edition (ICD-O-3) to categorise tumours. They use it to code the site of the tumour (where it is in the body) and the sub type (what the cells look like under the microscope - histology or morphology). These survival statistics are for HCL with the following ICD-O-3 code:
Hairy cell leukaemia usually develops slowly. It 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.
You might have more treatment if your leukaemia comes back (relapses). It can be possible to have a second remission.
The statistics below are from a French study. This looked at 279 patients with hairy cell leukaemia. The researchers looked at their response to treatment and survival.
The researchers measured the median relapse free survival. This means the length of time from starting treatment to the point at which treatment stopped working (relapse or death) in half of the patients in the study. The researchers found:
- the median relapse free survival after first line treatment was 11 years
- the median relapse free survival after second line treatment was around 7 years
(Your first treatment is called first line treatment. The next lot of treatment you have when you relapse is called second line treatment.)
The researchers looked at the length of time from diagnosis to the point at which half of the patients with hairy cell leukaemia were still alive. This is called median survival. The researchers found:
- the median survival was 27 years
The researchers looked at the number (proportion) of people who relapsed at 1,5, and 10 years. They found:
- around 5 out of 100 people (around 5%) relapsed within 1 year of starting treatment
- around 20 out of 100 people (around 20%) relapsed within 5 years of starting treatment
- around 40 out of 100 people (around 40%) relapsed within 10 years of starting treatment
Analysis of a cohort of 279 patients with hairy cell leukaemia (HCL): 10 years of follow up
J Paillassa and others
Blood Cancer Journal 2020 May Volume 10 issue 4 page 62
What affects survival
Several factors can affect your outlook (prognosis). These are called prognostic factors.
These factors include having:
- a very low red blood cell (haemoglobin), white blood cell (neutrophil) or platelet count
- swollen lymph nodes in your tummy (abdomen) – the doctors call this lymphadenopathy
- changes to the TP53 gene or not having changes to the IGHV gene
People who have a complete response to treatment do better than people who have a partial response. In hairy cell leukaemia, a complete response is when all signs of the leukaemia have disappeared. A partial response means there are still some abnormal leukaemia cells or other signs of the leukaemia.
About these statistics
The terms 1 year survival and 5 year survival don't mean that you will only live for 1 or 5 years.
The Office for National Statistics (ONS) and researchers collect information. They watch what happens to people with cancer in the years after their diagnosis. 5 years is a common time point to measure survival. But some people live much longer than this.
5 year survival is the number of people who have not died from their cancer within 5 years after diagnosis.