What is the outlook for chronic lymphocytic leukemia?

By Claire Sissons   

Reviewed by Christina Chun, MPH

Overview | Survival rates | Life expectancy | Living with CLL | Takeaway

Survival rates for chronic lymphocytic leukemia are good compared to many other cancers. Although doctors cannot often cure the disease, a person can live with this form of leukemia for many years with treatment.

In this article, we talk about survival rates for chronic lymphocytic leukemia (CLL) and the factors that can influence a person's life expectancy. We also discuss how to achieve a good quality of life with CLL.

CLL overview

Leukemia is a type of cancer that affects the bone marrow and blood. Lymphocytic leukemia begins in the white blood cells, known as lymphocytes. These cells originate in the bone marrow.

When a person has lymphocytic leukemia, white blood cells become leukemia cells, which can spread into the blood and other parts of the body.

CLL happens when white blood cells do not fully mature. They cannot fight infection properly, and they build up in the bone marrow. This means healthy white blood cells do not have as much room to thrive. Healthy white blood cells are crucial for fighting disease.

CLL does not usually have any symptoms, and someone may only discover they have it when they have a routine blood test. If a person does have symptoms, they may include the following:

• swelling of the lymph nodes in the neck, under the arms, or in the groin
• weight loss without an obvious cause
• extreme tiredness
• fever or high temperature, often due to an infection

There are two forms of CLL. The cells for each form are slightly different, but doctors can only tell the cells apart by testing them in a laboratory.

One form of CLL progresses very slowly, and a person may not need treatment for some time. The second form progresses more quickly and is considered to be more severe.

Doctors can only very rarely cure CLL. This means that a person must live with the disease, and is likely to need ongoing treatment. Often, people do not require treatment for a while.

Older adults are more likely than others to be affected by CLL, with 70 years being the average age of diagnosis. Those under the age of 40 years old are very unlikely to experience this type of cancer.

Survival rates

Survival rates can give a person more information about the outlook for their illness and help them to plan treatment and care. However, survival rates are only ever an estimate.

To find survival rates, researchers look at information about a group of people with a recent CLL diagnosis. Five years later, they look at data on the same group of people. The percentage of people in that group who are still living with the disease 5 years on is the survival rate.

This does not mean that life expectancy for a person with CLL is 5 years. Researchers typically collect data for survival rates at 1, 5, or 10 years after diagnosis.

Someone may live significantly longer than 5 years after a diagnosis of CLL. Researchers base survival rates on information from people who had a diagnosis of CLL 5 years before. So, if better treatments have become available in the following 5 years, people who have had a recent diagnosis may find the survival rates have improved.

In the United States, survival rates for leukemia have improved significantly over the past 40 years. The current survival rate for CLL is 83 percent. This means that about 83 out of every 100 people with CLL will be alive 5 years after diagnosis.

Factors that influence life expectancy

Doctors talk about stages to indicate how far cancer has progressed in a person's body. Because leukemia affects the blood, doctors cannot stage it in this way.

There are two systems for staging leukemia: the Rai system and the Binet system. In the U.S., doctors use the Rai system more commonly.

In the Rai system, a person will have blood tests to check for cancer cells and to find out how many white blood cells are in the blood and bone marrow. Alongside a physical exam, this information can give one of five stages for CLL:

• Stage 0: Increased number of white blood cells.
• Stage 1: Increased number of white blood cells, enlarged lymph nodes.
• Stage 2: Increased number of white blood cells, enlarged spleen, lymph nodes may be enlarged, liver may be enlarged.
• Stage 3: Increased number of white blood cells, low number of red blood cells, lymph nodes, liver, or spleen may be enlarged.
• Stage 4: Increased number of white blood cells, low number of platelets, number of red blood cells may be low, enlarged lymph nodes, liver, or spleen.

A higher stage number means that CLL is impacting more of the body. A higher stage will often shorten a person's life expectancy.

Other factors that can affect survival rates include:

• whether CLL has come back or improved with treatment
• how cancer cells have spread in the bone marrow
• if there are changes to a person's DNA and what they are
• a person's general health

People often feel better and live for longer when they receive treatment for CLL. Treatment focuses on stopping or slowing down the spread of CLL. If the condition is at an early stage, it may not need treatment.

Treatment options for CLL include:

• targeted therapy
• chemotherapy
• stem cell transplant
• drugs to support the immune system

After treatment, a person is likely to have periods of time when they have few or no symptoms of CLL. This is often known as remission. At the current time, medical professionals do not know if a person can reduce their risk of CLL coming back.

Living with CLL

Although there is no cure for CLL, ongoing treatment can help a person to live with the condition for a long time. There are several ways that someone who has CLL can support their health and wellbeing.

Going to all medical appointments is an essential part of managing any side effects of medication and treatment. When a doctor sees an individual at regular appointments, they have the chance to check for signs that CLL may be returning and treat it quickly.

Staying as healthy as possible can help with general health and wellbeing. People with CLL may find benefit from doing gentle exercise and eating a healthful diet.

Many people find living with a lifelong condition challenging. Getting emotional support and expressing feelings can help. A listening shoulder may be from friends, family, or community groups. In the U.S., the American Cancer Society offers information on local support groups and information services.

Having correct information can give a person more control and understanding. Finding out as much as possible about CLL and consulting with a doctor on how to lead a healthy lifestyle can help with decisions about treatment and care.

Takeaway

Doctors can very rarely cure CLL. However, survival rates for this cancer are good, particularly with early diagnosis and treatment. People can live with CLL for many years after diagnosis, and some can live for years without the need for treatment.

SOURCE: MEDICAL NEWS TODAY