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
These days, doctors think that most people with hairy cell leukaemia 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 hairy cell leukaemia survival. Statistics are available from one area of England.
Generally for people with hairy cell leukaemia:
- more than 95 out of every 100 (more than 95%) will survive their leukaemia for 5 years or more after they are diagnosed
Hairy cell leukaemia 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 2009 looked at patients with hairy cell leukaemia and their response to treatment and relapse rate. The 233 people in this study were treated at the same cancer centre in London and included people from different parts of the UK, as well as Europe and 7 other countries across the world. The researchers found that:
- at 5 years after diagnosis, hairy cell leukaemia came back in about 24 to 34 out of every 100 people (24 to 34%)
- at 10 years after diagnosis, hairy cell leukaemia came back in about 42 out of every 100 people (42%)
- at 15 years after diagnosis hairy cell leukaemia came back in about 48 out of every 100 people (47 to 48%)
If your leukaemia 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 the remission was shorter, your specialist is more likely to want to try a different treatment.
Long-term follow-up of 233 patients with hairy cell leukaemia, treated initially with pentostatin or cladribine, at a median of 16 years from diagnosis
M. Else and others
British Journal of Haematology, 2009. Volume 145, issue 6, pages 733 to 40
What affects survival
Having a very low red blood cell (haemaglobin), white blood cell (neutrophil) or platelet count, may affect your outlook.
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 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. Some people live much longer than 5 years.