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Chronic lymphocytic leukemia (CLL) often grows very slowly. Because this cancer can take many years to cause any symptoms or problems, you may decide to put off treatment. During this time, your medical team will monitor your cancer and start treatment if your cancer grows or you get symptoms. Doctors call this approach watchful waiting.

Other names for watchful waiting are:

  • Active surveillance
  • Active monitoring
  • Wait and see
  • Observation
  • Watch and wait

If you've ever had cancer or have known someone with cancer, you know how important it is to treat most cancers early to prevent them from spreading. CLL is different.

It might feel a little scary to put off treatment, but waiting doesn’t typically affect your outcome. In people with CLL who are eligible for a watch-and-wait approach, studies show no benefit to getting treatment right away versus later.

Waiting lets you avoid the side effects and complications of CLL treatments like chemo and radiation for a while. CLL treatments will work just as well in 6 months or in 5 years as they would right now.

What Happens in Watchful Waiting?

Your medical team won't just leave you alone during watchful waiting. They'll monitor your symptoms and give you tests to check your cancer.

During these checkups, your doctor will ask if you've had symptoms like weight loss or night sweats. You'll have exams to look for any swelling in your lymph nodes, spleen, or liver. That would be a sign that you have a lot of cancer cells in those areas.

You'll also get blood tests during your visits.

A complete blood count, or CBC, measures the number of blood cell types in a sample of your blood. Red blood cells carry oxygen to your organs and tissues. Platelets help your blood clot. A drop in the number of these cells can be another sign that your cancer has grown.

A test called lymphocyte doubling time measures the amount of time it takes your lymphocyte count to double. Lymphocytes are white blood cells in your immune system. CLL causes many abnormal lymphocytes to build up in your bone marrow. If the number of these cells doubles in less than 6 months or increases by more than 50% in 2 months, your cancer may have progressed.

You may have follow-up visits with your doctor every 2 to 3 months in the first year after your diagnosis. After that, if your cancer is stable, your doctor might space out the visits to once every 4 to 6 months.

Is a ‘Wait and See’ Approach Right for You?

Watchful waiting is for people with low-risk CLL. Low-risk means that your cancer moves slowly and takes a long time to grow. You may have a higher number of lymphocytes than usual, but your red blood cells and platelets are normal or close to normal.

This approach isn't right for you if you have a faster-growing, high-risk type of CLL. That's when you have too many abnormal white blood cells and too few red blood cells and platelets. Then you'll need to start on treatment right away.

How Does Your Doctor Know When to Start Treatment?

You could be in the watchful waiting phase for years because CLL can be a slow-moving cancer. The time to start treatment is when your cancer grows or you have symptoms.

Through routine visits and tests – or when you report symptoms or changes between visits –  your doctor will determine whether you need to start treatment.

These are some signs that your doctor might discover that mean it’s time for treatment:

  • Exams show that your lymph nodes and spleen are swollen.
  • You have cancer cells in places like your kidneys, lungs, and spine.
  • Your red blood cell and platelet counts have dropped.

You’ll also need to watch for symptoms on your own. In between doctor visits, let your medical team know right away if you have any new symptoms, such as:

  • Swollen glands in your neck, under your arms, or in your groin
  • Night sweats
  • Unplanned weight loss
  • A fever of 100.4 F or higher
  • Extreme tiredness
  • A feeling of fullness in your belly
  • Bleeding or bruising more easily than usual

 

How to Manage Anxiety While You Wait

CLL may be a slow-growing cancer, but it's not curable. Eventually your cancer will progress and you'll need to treat it. The watchful waiting period can be stressful because you never know when your cancer will start to grow.

Here are some actions you can take to help you feel more in control:

  • Learn as much as you can about your cancer.
  • Eat a healthy diet with lots of fresh fruits and vegetables. Avoid processed foods and meats that are high in saturated fat.
  • Exercise as much as you can.
  • Don’t smoke.
  • Don't skip any doctor appointments.
  • Monitor your symptoms and tell your medical team about any changes in your health.

Don’t forget to take care of your mental health, too. You might join a support group for people with cancer who are watching and waiting. The Leukemia & Lymphoma Society can point you to groups in your area or online. If you feel too stressed or anxious, ask your health care team to refer you to a mental health professional.

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SOURCES:

American Cancer Society: "What is Chronic Lymphocytic Leukemia?"

Canadian Cancer Society: "Prognosis and survival for chronic lymphocytic leukemia," "Stages of chronic lymphocytic leukemia."

Cancer Research UK: "Survival for chronic lymphocytic leukaemia (CLL)."

National Cancer Institute: "Chronic Lymphocytic Leukemia Treatment (PDQ) – Patient version."

Patient Empowerment Network: "Not to Worry! Your Guide to Watch and Wait."

The Leukemia & Lymphoma Society: "Chronic Lymphocytic Leukemia," "Watch and Wait."

University of Rochester Medical Center: "Chronic Lymphocytic Leukemia (CLL): Watchful Waiting."