Survival for chronic lymphocytic leukaemia (CLL) RF Change test!

Chronic lymphocytic leukaemia (CLL) often develops very slowly. You might need little or no treatment. Although it is not usually curable, the disease can be under control for many years. But CLL can progress more quickly in some people. This might mean you need treatment earlier or need many different courses of treatment.

The outlook (prognosis) can vary. Some people live for many years. But for some, the outlook is less good. 

These are general statistics based on large groups of patients. Remember, they can’t tell you what will happen in your individual case.

Your doctor can give you more information about your own outlook. You can also talk about this with the Cancer Research UK nurses. The freephone number is 0808 800 4040, from 9am to 5pm, Monday to Friday.

Survival for all people with CLL RRichard change

No UK-wide statistics are available for CLL survival. Statistics are available for CLL diagnosed in one area of England between 2004 and 2016. 

Generally for all people with CLL:

• around 85 out of 100 people (around 85%) will survive their leukaemia for 5 years or more after being diagnosed

This is for all ages. Younger people tend to do better than older people:

For those younger than 60: 

• around 95 out of 100 (around 95%) will survive their leukaemia for 5 years or more after diagnosis

For those aged between 60 and 69:

• almost 90 out of 100 (almost 90%) will survive their leukaemia for 5 years or more after diagnosis

For those aged between 70 and 79:

•  more than 80 out of 100 (more than 80%) will survive their leukaemia for 5 years or more after diagnosis

For those who are 80 or older:

• around 65 out of 100 (around 65%) will survive their leukaemia for 5 years or more after they are diagnosed

What affects survival RICHARD CHANGE!!!

Several factors can affect your outlook (prognosis). These are called prognostic factors. 

These factors include how advanced your CLL is (the stage), as well as your age and gene changes in your leukaemia cells. Our understanding of CLL and possible treatments have changed in the last few years. The information about how these factors impact survival is slightly behind these improvements.

Some doctors use a scale called the Chronic Lymphocytic Leukaemia International Prognostic Index (CLL-IPI). This helps them talk to you about your prognosis.

Chronic Lymphocytic Leukaemia International Prognostic Index (CLL- IPI)

This scale has 5 prognostic factors that doctors can use to predict your outlook. These 5 factors are:

• being older than 65 years
• having Binet stage B or C chronic lymphocytic leukaemia
• having changes to the TP53 gene
• not having changes to the IGHV gene
• a higher blood level of a protein called beta 2 microglobulin

Your doctor gives you points for each factor - some factors get more points than others. They use your score to divide people with CLL into 4 risk groups:

• low risk
• intermediate (moderate) risk
• high risk
• very high risk

Although this prognostic index is quite recent, treatment continues to change. Doctors are using new targeted drugs to treat CLL. These might improve the outlook for some people.

Doctors generally still think this index is a useful tool to help predict prognosis. Researchers continue to collect information about patients having these new treatments. They will use this new information to review the index.

Survival for the CLL risk groups

We used to present survival statistics for the different CLL stage groups (stage A, B and C). But survival for CLL has changed. Doctors are using new targeted drugs that have improved the outlook for people with more advanced stages. And doctors know that other factors also affect your outlook, such as your age or gene changes.

Instead of survival by stage, we provide survival statistics from the Chronic Lymphocytic Leukaemia International Prognostic Index (CLL-IPI) study. This study looked at data about CLL patients from 8 international clinical trials. The researchers looked at all the trial data together. They put the patients into 4 risk groups.

The statistics below are for the 4 different risk groups.

We are aware that you might not have had all the tests to find out your risk group. And your doctor might not have spoken to you about the prognostic index or your risk group. So it might be difficult to find the information that you are looking for below.

Talk to your doctor about your prognosis. They might be able to tell you more about your risk group and your outlook.

Please bear in mind that CLL treatment is improving as doctors use new targeted drugs. So people treated now might have a better outlook.

Low risk

Almost 95 out of 100 people (almost 95%) survive for 5 years or more after diagnosis.

Intermediate risk

Around 80 out of 100 people (around 80%) survive for 5 years or more after diagnosis.

High risk

Almost 65 out of 100 people (almost 65%) survive for 5 years or more after diagnosis.

Very high risk

Almost 25 out of 100 people (almost 25%) survive for 5 years or more after diagnosis.

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 about 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. 

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