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PubMed This is a summary of 15 peer-reviewed journal articles Updated
Oncology · Chronic Lymphocytic Leukemia

Validation & Orientation

At a Glance

Chronic Lymphocytic Leukemia (CLL) is a slow-growing blood cancer. For many early-stage patients, the standard of care is 'watch and wait' (active surveillance), because early treatment does not improve survival but can cause unnecessary side effects.

Receiving a leukemia diagnosis is a profound shock, especially when it happens unexpectedly through routine blood work for an unrelated issue [1]. You may feel a confusing mix of relief that you caught it and intense anxiety about what comes next. It is important to know that you are not alone; Chronic Lymphocytic Leukemia (CLL) is one of the most common types of leukemia in adults [1][2].

Understanding Your Diagnosis

Chronic Lymphocytic Leukemia (CLL) is a type of cancer that begins in the bone marrow, the soft inner part of certain bones where new blood cells are made [3]. Specifically, it affects B-lymphocytes (B-cells), which are white blood cells that normally help your body fight infection [4]. In CLL, the body produces too many of these cells, but they do not function correctly and live longer than they should [3][5].

You may also hear the term Small Lymphocytic Lymphoma (SLL). Biologically, CLL and SLL are the exact same disease [4][6]. The only difference is where the cancer cells are primarily found:

  • CLL is diagnosed when most of the cancer cells are found in the blood and bone marrow [7].
  • SLL is diagnosed when the cancer cells are mostly found in the lymph nodes or the spleen, without a high number of cancer cells in the bloodstream [7].

The Strategy of ‘Watch and Wait’

Perhaps the most difficult part of a CLL diagnosis is being told that you have cancer but will not start treatment immediately. This approach is known as Watch and Wait (or active surveillance) [8]. While it may feel like negligence, this is the evidence-based standard of care for early-stage, asymptomatic CLL [9][10].

There are three primary reasons why doctors recommend this approach:

  1. Indolent Nature: Many cases of CLL are indolent, meaning they grow very slowly over many years and may never cause symptoms [11][12].
  2. No Survival Advantage to Early Treatment: Research has shown that starting treatment before a patient has symptoms or significant disease progression does not help them live longer [9][13].
  3. Preserving Quality of Life: All treatments have side effects and risks. By waiting until treatment is truly necessary, you avoid these toxicities for as long as possible [14][15].

Navigating ‘Watch and Worry’

It is completely normal for the “watch and wait” period to feel more like “watch and worry” [10]. The psychological burden of living with an untreated cancer can be significant, causing anxiety and distress [10][13].

To manage this, your care team will monitor you closely using:

  • Routine Blood Work: Tracking your Absolute Lymphocyte Count (ALC) to see how quickly the number of white blood cells is rising [7].
  • Physical Exams: Checking for any new swelling in your lymph nodes, liver, or spleen [7].
  • Symptom Monitoring: Watching for “B-symptoms” like drenching night sweats, unintended weight loss, or extreme fatigue [11].
Term Definition
B-cells White blood cells that produce antibodies to fight germs.
Indolent A slow-growing disease that may not cause symptoms for a long time.
Lymphadenopathy Swelling of the lymph nodes, often a sign of immune activity or disease.
Active Surveillance A plan to monitor a condition closely without treatment unless changes occur.

Knowing that your medical team is using specific, evidence-based criteria to decide when to move from surveillance to treatment can help transform “watch and worry” into a proactive partnership in your care [11][12].

Common questions in this guide

What is the difference between CLL and SLL?
Chronic Lymphocytic Leukemia (CLL) and Small Lymphocytic Lymphoma (SLL) are biologically the exact same disease. The main difference is that in CLL, cancer cells are mostly in the blood and bone marrow, while in SLL, they are primarily in the lymph nodes or spleen.
Why do doctors recommend 'watch and wait' instead of immediate treatment?
Many cases of CLL are very slow-growing and may never cause symptoms. Research shows that starting treatment before symptoms appear does not help you live longer and only exposes you to the side effects and risks of cancer treatments too soon.
What symptoms should I look out for during the watch and wait period?
During active surveillance, you should watch for what doctors call 'B-symptoms.' These include drenching night sweats, unintended weight loss, and extreme fatigue, as well as any new swelling in your lymph nodes.
How will my doctor monitor my CLL without treating it?
Your care team will monitor you closely using routine blood work to track your Absolute Lymphocyte Count (ALC). They will also perform physical exams to check for any new swelling in your lymph nodes, liver, or spleen.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.What was my absolute lymphocyte count (ALC) and what does that mean for my diagnosis?
  2. 2.Have you performed FISH and IGHV testing to help determine how my disease might progress?
  3. 3.Based on my specific test results, why is 'watch and wait' the safest choice for me right now?
  4. 4.What specific symptoms or blood count changes would trigger a move from surveillance to active treatment?
  5. 5.How often will we do follow-up blood work, and what are we looking for in those results?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (15)
  1. 1

    Chronic lymphocytic leukemia: 2017 update on diagnosis, risk stratification, and treatment.

    Hallek M

    American journal of hematology 2017; (92(9)):946-965 doi:10.1002/ajh.24826.

    PMID: 28782884
  2. 2

    PD-1 expression contributes to functional impairment of NK cells in patients with B-CLL.

    Farhat M, Croft W, Parry HM, et al.

    Leukemia 2024; (38(8)):1813-1817 doi:10.1038/s41375-024-02271-1.

    PMID: 38724674
  3. 3

    Chronic lymphocytic leukemia: 2022 update on diagnostic and therapeutic procedures.

    Hallek M, Al-Sawaf O

    American journal of hematology 2021; (96(12)):1679-1705 doi:10.1002/ajh.26367.

    PMID: 34625994
  4. 4

    Composite Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma and Mantle Cell Lymphoma; Small Cell Variant: A Real Diagnostic Challenge. Case Presentation and Review of Literature.

    Ibrahim F, Al Sabbagh A, Amer A, et al.

    The American journal of case reports 2020; (21()):e921131 doi:10.12659/AJCR.921131.

    PMID: 32150530
  5. 5

    BDNF belongs to the nurse-like cell secretome and supports survival of B chronic lymphocytic leukemia cells.

    Talbot H, Saada S, Barthout E, et al.

    Scientific reports 2020; (10(1)):12572 doi:10.1038/s41598-020-69307-1.

    PMID: 32724091
  6. 6

    Intestinal Infiltration of Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma Found on Screening Colonoscopy.

    Aje KT, Abegunde AT, Mirza K

    Cureus 2022; (14(1)):e21037 doi:10.7759/cureus.21037.

    PMID: 35155005
  7. 7

    Durable Molecular Remissions in Chronic Lymphocytic Leukemia Treated With CD19-Specific Chimeric Antigen Receptor-Modified T Cells After Failure of Ibrutinib.

    Turtle CJ, Hay KA, Hanafi LA, et al.

    Journal of clinical oncology : official journal of the American Society of Clinical Oncology 2017; (35(26)):3010-3020 doi:10.1200/JCO.2017.72.8519.

    PMID: 28715249
  8. 8

    Alemtuzumab consolidation in chronic lymphocytic leukaemia: a phase I/II multicentre trial.

    Al-Sawaf O, Fischer K, Herling CD, et al.

    European journal of haematology 2017; (98(3)):254-262 doi:10.1111/ejh.12825.

    PMID: 27862308
  9. 9

    Chronic lymphocytic leukemia: 2020 update on diagnosis, risk stratification and treatment.

    Hallek M

    American journal of hematology 2019; (94(11)):1266-1287 doi:10.1002/ajh.25595.

    PMID: 31364186
  10. 10

    The CLL12 trial: ibrutinib vs placebo in treatment-naïve, early-stage chronic lymphocytic leukemia.

    Langerbeins P, Zhang C, Robrecht S, et al.

    Blood 2022; (139(2)):177-187 doi:10.1182/blood.2021010845.

    PMID: 34758069
  11. 11

    Chronic lymphocytic leukaemia.

    Hallek M, Shanafelt TD, Eichhorst B

    Lancet (London, England) 2018; (391(10129)):1524-1537 doi:10.1016/S0140-6736(18)30422-7.

    PMID: 29477250
  12. 12

    Clinical outcome and prognostic factors in dogs with B-cell chronic lymphocytic leukemia: A retrospective study.

    Rout ED, Labadie JD, Yoshimoto JA, et al.

    Journal of veterinary internal medicine 2021; (35(4)):1918-1928 doi:10.1111/jvim.16160.

    PMID: 33998726
  13. 13

    Early treatment with FCR versus watch and wait in patients with stage Binet A high-risk chronic lymphocytic leukemia (CLL): a randomized phase 3 trial.

    Herling CD, Cymbalista F, Groß-Ophoff-Müller C, et al.

    Leukemia 2020; (34(8)):2038-2050 doi:10.1038/s41375-020-0747-7.

    PMID: 32071431
  14. 14

    Final analysis from RESONATE: Up to six years of follow-up on ibrutinib in patients with previously treated chronic lymphocytic leukemia or small lymphocytic lymphoma.

    Munir T, Brown JR, O'Brien S, et al.

    American journal of hematology 2019; (94(12)):1353-1363 doi:10.1002/ajh.25638.

    PMID: 31512258
  15. 15

    Venetoclax-Rituximab in Relapsed or Refractory Chronic Lymphocytic Leukemia.

    Seymour JF, Kipps TJ, Eichhorst B, et al.

    The New England journal of medicine 2018; (378(12)):1107-1120 doi:10.1056/NEJMoa1713976.

    PMID: 29562156

This page provides educational information about Chronic Lymphocytic Leukemia and the watch and wait strategy. It does not replace professional medical advice from your hematologist or oncologist.

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