Watch and Wait: Why Doctors Don’t Always Treat CLL Right Away

Both the National Cancer Institute and American Cancer Society note that most early-stage, asymptomatic CLL patients don’t need treatment right away. Many can go years, or even decades, without therapy.

“If a patient is doing fine and we have just an abnormality on a piece of paper on a blood test, that probably is not enough of a justification to treat,” Dr. Gary Schiller, director of the Hematologic Malignancy Stem Cell Transplant Program at UCLA’s David Geffen School of Medicine, tells SurvivorNet.

Studies show that 30 to 50% of patients with early‑stage CLL may never require treatment in their lifetime.

If you feel well and your CLL is not causing significant problems, starting treatment immediately has not been shown to help you live longer than carefully monitoring the disease and treating when needed.

Treatment can also cause side effects and other risks, so the goal is to begin treatment when the potential benefits outweigh those risks, not simply because CLL is present.

Monitoring For CLL Symptoms & Side Effects

Dr. Schiller explains that after a patient is diagnosed, he tends to see them for testing and monitoring a bit more frequently.

“Then, depending on the patient, there may be some patients we only examine twice or three times a year,” he says.

During watch and wait, your care team will monitor your blood counts, lymph nodes, spleen, symptoms, and the overall pace of your disease.

This process may include:

• Regular blood work
• Physical exams
• Periodic assessments for symptoms such as fatigue, night sweats, enlarged lymph nodes, or infections

“What would prompt a call for a more rapid follow-up might be if the patient suddenly became fatigued or started losing weight or developed fever, chills, night sweats to the point that they really have to change whatever they’re wearing at night,” Dr. Schiller explains.

“Those things could push a button, and we might want to see a patient quickly,” he adds.

Treatment may become appropriate if CLL begins to cause problems such as worsening anemia or low platelets, rapidly enlarging lymph nodes or spleen, significant fatigue, unexplained weight loss, persistent fevers, drenching night sweats, or other clear signs that the disease is progressing.

A high lymphocyte count by itself does not necessarily mean it is time to treat.

Your doctor looks at the entire picture and, especially, whether the disease is changing or affecting your health and quality of life.

What Drives CLL Progression

Certain genetic or molecular features can indicate that CLL is more likely to progress quickly. Even people with high-risk features may sometimes be safely monitored if they have no symptoms or other signs that treatment is needed. However, they may require closer follow-up because their disease can change more quickly.

Think of watch and wait as surveilling the disease closely. The goal is to start treatment when it is most likely to benefit you, while avoiding unnecessary treatment and its potential side effects.

Questions To Ask Your Doctor

• How often will I be monitored if we take a “watch and wait” approach?
• What signs would indicate that it’s time to start treatment?
• What symptoms should I monitor for at home?
• Should I undergo genetic testing?

Learn more about SurvivorNet's rigorous medical review process.

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