Chronic Lymphocytic Leukemia (CLL): Watchful Waiting

What is watchful waiting? 

Watchful waiting is when treatment isn't started as soon as someone is diagnosed with a disease. It’s also known as observation or active surveillance.

The goal is to keep close track of the disease to see if it gets worse or starts to cause symptoms. If it does, treatment can then be started.

Why watchful waiting is used for CLL

Watchful waiting is often a good choice for people with early stage and low- or intermediate-risk CLL that isn’t causing symptoms, or is only causing mild symptoms. In these cases, it may be better to wait than start treatment, especially one that could cause severe side effects. Research has shown that for early stage CLL, watchful waiting doesn't cause harm when compared with starting treatment right away.

What happens during watchful waiting for CLL

Your healthcare provider will keep track of your blood counts to see if they get worse. You'll also be checked for signs of symptoms that need to be treated. You'll need to have your blood drawn on a regular basis. Your healthcare provider will look at how your counts change over time. For instance, is your red blood cell count steadily dropping?

Your healthcare provider will also watch for:

• Infections that keep coming back

• Rapid swelling in certain organs, such as your lymph nodes, liver, or spleen

• Symptoms, such as tiredness (fatigue), fever, and weight loss

These changes may mean that the disease is getting worse.

CLL often progresses much more slowly than acute types of leukemia. Many people can live with the disease for many years without any problems and without needing treatment.

Watching for symptoms

Let your healthcare provider know if you have any of these symptoms:

• Fever or other signs of infection

• Chills

• Night sweats

• Unplanned weight loss

• Feeling very tired

• Pain in your belly (abdomen)

• A feeling of fullness in your belly

• Enlarged lymph nodes, often felt as lumps under the skin

• Bleeding or bruising easily

If you start having symptoms or if your healthcare provider sees signs that the leukemia is progressing, treatment will be started. Your provider will talk with you about your treatment choices. The type of treatment you have will depend on disease factors, your age, and your overall health.