Blood Cancer & 'Watch and Wait' (Active Surveillance)

This page is for people with a slow-growing blood cancer who have been told to "watch and wait." It explains why doctors choose this, what monitoring involves, and how to cope.

Some blood cancers are diagnosed and then, deliberately, not treated. You are given a diagnosis, a schedule of blood tests and visits, and no medication. This is called watch and wait, watchful waiting, or active surveillance.

NCI lists watchful waiting as a treatment option for chronic lymphocytic leukemia (CLL). For people with advanced-stage follicular lymphoma, NCI says it is an option, and calls it a standard of care at diagnosis for people without symptoms. Ask your team if it applies to you.

Many people find this hard. Someone with cancer is being watched, not treated. That reaction is normal, and it is worth saying out loud to your team.

The reason is not cost. It is that treating earlier has been tested against waiting. It has not been shown to help people live longer.

Take follicular lymphoma. NCI says three randomized trials compared watchful waiting with immediate chemotherapy. None showed a difference in survival. For people who were watched, the median time to needing treatment was 2 to 3 years. One-third never needed treatment.

In CLL, NCI says a review of randomized trials showed no survival benefit from immediate versus delayed treatment in early-stage disease. The phase III CLL12 trial (published in the Journal of Clinical Oncology, 2025) randomized people with early-stage, symptom-free CLL at higher risk of progression to ibrutinib or placebo. Ibrutinib delayed progression (hazard ratio 0.276). No survival benefit was shown. Five-year survival was 93.3% with ibrutinib and 93.6% with placebo. The investigators wrote that "watch and wait remains the standard of care irrespective of risk factors." Ibrutinib also raised heart-related side effects.

NCI says advanced follicular lymphoma is not cured by current treatments, and that most CLL treatment is not curative. In follicular lymphoma, NCI says survival is about the same across many treatment options. So starting sooner has not been shown to add to lifespan. It does add side effects.

It is monitoring, not absence. NCI says frequent and careful observation is needed, because the pace of the disease varies from person to person. Ask your team how often you will be seen and which tests you will have.

For CLL, NCI lists these signs that treatment may be needed:

• worsening anemia (low red blood cells) or low platelets
• a fast-rising lymphocyte (a type of white blood cell) count
• a very large or symptomatic spleen or lymph nodes
• weight loss you cannot explain, significant fatigue, fever for two weeks or more without infection, or night sweats for a month or more

In follicular lymphoma, NCI says treatment is started when symptoms appear.

Knowing the specific triggers helps. Ask what yours are, in plain terms. Then you know what you are watching for, and what does not count.

The hardest thing about watch and wait is that it asks you to live alongside a diagnosis without a task. Many people feel anxious, angry or sad when a cancer is watched and not treated. Tell your team how you feel.

Some things help:

• Know your own numbers and trends, rather than only being told they are fine.
• Have a clear list of symptoms that mean you should call earlier.
• Plan something after each appointment, so the day is not only about waiting.
• Connect with others in the same position. This experience is specific, and hard to explain to people whose cancer meant immediate treatment.

NCI says infections are a concern in CLL, and that early recognition and treatment of infection is critical. Ask which vaccines and precautions are right for you.

You can ask for a second opinion at any time.

• Call 911 or go to the nearest emergency department if you have black or tarry stool, blood in vomit or vomit that looks like coffee grounds, bleeding that will not stop, or sudden confusion or being hard to wake.
• Call your care team right away, day or night, if you have a temperature of 100.4°F (38°C) or higher, chills, a sore throat, sores or white coating in your mouth, burning or bloody urine, or any other sign of infection. According to NCI, an infection during cancer treatment can be life threatening and needs urgent medical attention. Talk with your team before you take aspirin, acetaminophen or ibuprofen for a fever.
• Call your care team the same day if you have night sweats, weight loss you cannot explain, easy bruising or bleeding, or new swollen lymph nodes. Tell your team about these.

• What exactly would make us start treatment?
• What are my prognostic markers (test results that help predict how the disease may behave), and what do they change? In CLL those include IGHV mutation status, del(17p) and TP53.
• Which symptoms should make me call between visits?
• What would treatment look like when the time comes, so it is not an unknown?

• PubMed (NIH): Ibrutinib in Early-Stage CLL, the phase III CLL12 trial (J Clin Oncol 2025)
• NCI PDQ: Chronic Lymphocytic Leukemia Treatment (Health Professional Version)
• NCI PDQ: Adult Non-Hodgkin Lymphoma Treatment (Health Professional Version)
• NCI: Infection and Neutropenia During Cancer Treatment
• NCI: Adult Non-Hodgkin Lymphoma Treatment (PDQ) - Patient Version
• NCI: Feelings and cancer