At this time, there are no special tests that can find chronic lymphocytic leukemia (CLL) early. The best course of action is to report any symptoms to your doctor right away.

Symptoms of CLL

Many people with CLL have no symptoms at the time their cancer is found. In these cases, the cancer is found by blood tests done for some other reason. Even when there are symptoms, they may be very general.

Symptoms of CLL can include the following:

• weakness
• feeling very tired
• weight loss
• fever
• night sweats
• swollen lymph nodes (felt as lumps under the skin)
• pain or a sense of "fullness" in the belly (especially after eating a small meal), which is caused by an enlarged spleen

Many of the symptoms of advanced CLL happen because the leukemia cells replace the bone marrow's normal blood-making cells. As a result, people do not make enough red blood cells, normal white blood cells, and blood platelets.

• Anemia is a result of a shortage of red blood cells. Anemia causes shortness of breath, tiredness, and a pale skin color.

• Not having enough normal white blood cells increases the risk of infection. Although people with leukemia may have very high white blood cell counts, the cells are not normal and do not protect against infection very well. A common term you may hear is neutropenia, which refers to low levels of a type of cell called a neutrophil.

• Not having enough blood platelets can lead to bruising, bleeding, frequent or severe nosebleeds, and bleeding from the gums.

People with CLL have a higher risk of infections. This is mainly because their immune systems are not working as well as they should. Infections may range from simple things like frequent colds or cold sores to pneumonia and other serious infections.

CLL may also affect the immune system in other ways. In some people with CLL, the immune system cells make abnormal antibodies that attack normal blood cells. This is known as autoimmunity.

CLL often causes the liver or spleen to become enlarged. If these organs are enlarged, you may notice fullness or swelling of the belly.

CLL will often invade the lymph nodes. If the nodes are close to the surface of the body (for instance, on the sides of the neck, in the groin, in the arm pit, or above the collarbone), you or your doctor may notice the swelling as a lump under the skin. Lymph nodes inside the chest or belly may also become swollen, but these can be found only by imaging tests like those listed below.

The symptoms listed above may be caused by CLL, but they can also be caused by other problems. Still, if you have any of these symptoms, see a doctor right away so the cause can be found and treated, if needed.

Tests to look for leukemia

Just because a person has some of the symptoms listed above does not mean that they have leukemia. The doctor will need to learn more.

Medical history and physical exam

If you have any signs or symptoms that suggest you might have leukemia, your doctor will want to take a complete medical history. The doctor will ask questions about your health, any symptoms you might have, and your family's health.

A physical exam tells the doctor about your general health, possible signs of leukemia, and other health problems. During the physical exam, your doctor will pay close attention to your lymph nodes and other areas that might be affected.

Types of samples used to test for chronic lymphocytic leukemia

If symptoms or the results of the physical exam suggest you might have leukemia, the doctor will need to check samples of blood and bone marrow to be certain of the diagnosis. Other tissue and cell samples may also be taken to help guide treatment.

Blood samples: Blood samples for tests to check for CLL are most often taken from a vein in the arm.

Bone marrow samples: A bone marrow aspiration and biopsy are 2 tests that are usually done at the same time. Samples are most often taken from the back of the pelvic (hip) bone, but in some cases they may be taken from the breastbone or other bones.

In bone marrow aspiration, a thin needle is used to draw up a small amount of liquid bone marrow. The skin and the surface of the bone are first numbed, but the test can still cause some brief pain. During a bone marrow biopsy, a small cylinder of bone and marrow (about ½ inch long) is removed with a slightly larger needle that is twisted as it is pushed into the bone. The biopsy may also cause some brief pain. Once the biopsy is done, pressure and maybe an ice pack will be applied to the site to help prevent bleeding.

Both samples are usually taken at the same time. These tests are mostly used to tell how advanced the leukemia is before treatment starts. They are also done during treatment to see how well the treatment is working.

Excisional lymph node biopsy: For this test, an entire lymph node is removed. If the node is near the skin's surface, a simple operation can be done by numbing just the area around the node. But if the node is inside the chest or belly (abdomen), the patient will need general anesthesia (drugs that put you into a deep sleep). This method is rarely needed for people with CLL unless a lymph node has grown very large.

Lumbar puncture (spinal tap): This test is used to look for leukemia cells in the liquid that surrounds the brain and spinal cord. After numbing the skin a small needle is placed between the bones of the lower spine to draw out some cerebrospinal fluid (CSF). The fluid is looked at for leukemia cells. This test is only done for patients with CLL if it appears that there may be leukemia cells in their brain or spinal cord, or if there might be an infection in those areas.

Lab tests

One or more of these lab tests may be done on the samples to diagnose CLL or to help the doctor figure out how advanced the disease is.

Blood cell tests: Changes in the numbers of different blood cell types and how the cells look under a microscope can suggest leukemia. Most people with CLL have too many of the white blood cells called lymphocytes. Anything more than 10,000 lymphocytes in a cubic millimeter (mm³) of blood makes CLL almost certain. Often there are too few red blood cells and platelets as well.

People with leukemia will have tests done to measure the amount of certain chemicals in the blood. These tests do not tell if they have leukemia but can help tell how well their kidneys and liver are working. The test results also help the doctor decide whether treatment is needed to correct low or high blood levels of certain minerals.

Any samples taken (blood, bone marrow, lymph nodes, etc.) are looked at under a microscope by a doctor with special training (called a pathologist). The doctor looks at the size and shape of the cells as well as other features to classify the cells into specific types. An important goal of this process is to see whether or not the cells look mature. The most immature cells are called blasts. These blasts do not work well in fighting infections, but they can reproduce, crowding out normal, mature cells. Doctors also look at whether there are the normal numbers of blood forming cells or whether leukemia cells have replaced these.

In addition, doctors use a number of very precise lab tests to diagnose and classify leukemia. You might hear some of the following terms used: cytochemistry, flow cytometry, FISH, immunocytochemistry, cytogenetics, and molecular genetic studies. These tests are explained in a separate American Cancer Society detailed guide, Leukemia: Chronic Lymphocytic.

Imaging tests

Imaging studies are ways of taking pictures of the inside of the body. There are many imaging tests that might be used for people with leukemia. They are not done to find leukemia but rather to help find out the extent of the disease and how well treatment is working.

CT (computed tomography) scans: These are special kinds of x-rays in which a beam moves around the body, taking pictures from different angles. Details in soft tissues, such as swollen lymph nodes in the chest or in other parts of the body, show up better on CT scans than on x-rays.

CT scans take longer than regular x-rays. You need to lie still on a table while they are being done. During the test, the table moves in and out of the scanner, a ring-shaped machine that surrounds the table. You might feel a bit confined by the ring you have to lie in while the pictures are being taken.

Before the scan, you may be asked to drink a contrast liquid or get an intravenous (IV) injection of a contrast dye that helps better outline organs in the body. Some people are allergic and get hives or, rarely, more serious problems like trouble breathing and low blood pressure. Be sure to tell the doctor if you have ever had a reaction to any contrast dye used for x-rays.

Spiral CT (also known as helical CT) is now available in many medical centers. This type of CT scan uses a faster machine and gives more detailed pictures.

MRI (magnetic resonance imaging): MRI scans use strong magnets and radio waves to make detailed pictures of the body. MRI scans are very helpful in looking at the brain and spinal cord. They take longer than CT scans, often up to an hour. You may need to lie inside a narrow tube for the test. This can upset people with a fear of enclosed spaces. Newer, "open" MRI machines can help with this if needed. The MRI machine makes loud buzzing and thumping noises that some people may find disturbing. Some places give you headphones to block this out.

Ultrasound: This test uses sound waves to get pictures of internal organs--not radiation. Ultrasound can be used to look at lymph nodes near the surface of the body or to look for enlarged organs inside your belly. This is a very easy test to have done. You simply lie on a table and a small wand (called a transducer) is moved over the part of the body being looked at.

Chest X-ray: A plain x-ray of your chest can be done in most outpatient settings. In patients with CLL, it isn't needed to find the cancer, but it may be used to see whether your lungs are normal or if you have an infection.

Last Medical Review: 08/13/2009
Last Revised: 08/13/2009