Chronic lymphocytic leukemia (CLL) is a type of cancer that occurs in cells of the bone marrow that produce a certain type of white blood cells called lymphocytes.1 As the cancerous cells grow in the bone marrow, many more lymphocytes are produced than in a person without cancer.1 Many individuals with CLL are not diagnosed because of any particular symptoms, but rather because an abnormally high number of lymphocytes are detected in a routine blood test.2
Compared with other cancers, progression of CLL after initial diagnosis can be quite slow, even without treatment.2 Indeed, some patients can live for decades as they normally would without needing to start any type of medical intervention.1 Patients may be surprised to hear when they are first diagnosed with CLL that they do not need to start immediate therapy, and instead can simply monitor the progression of the cancer through a period that is often called “watch and wait.”1
Being in a watchful waiting period can induce anxiety in some patients, who instead call it “watch and worry,” as they are continually on the lookout for new symptoms that indicate that the disease is progressing.3 Some doctors prefer to call the period “active observation,” a term that indicates that doctors and patients are actively collaborating to monitor the patient’s health and understand their needs.3
Regardless of how it is labeled, patients who are not receiving treatment for their CLL should feel comfortable and confident in raising any of their health issues with their hematologist/oncologist.3 Speaking with a healthcare provider can help reduce a patient’s anxiety, as these discussions can help sort out which symptoms may be related to CLL and which ones are related to other factors.3
Fatigue, for instance, is a common symptom experienced by patients with CLL, and could, in some cases, be related to disease progression.3 However, fatigue can also be caused by other non-CLL medications or medical conditions such as heart issues, high blood pressure, or diabetes.3 Similarly, joint issues, which are another symptom commonly mentioned by patients with CLL, could be caused by different forms of arthritis.3 Untangling the causes of each symptom requires a trained professional, so patients should not be timid about raising anything that does not seem normal with their healthcare provider.3 Often, when initiating CLL therapy is not needed, only changes to other medications or lifestyle habits can overcome the symptoms that patients are experiencing.3
Patients can help their doctors by keeping notes of what symptoms they are facing and when they occur.3 Writing information in a notebook can help prevent patients from forgetting the details of their symptoms between visits to their doctor.3
An important aspect to active observation is for patients to maintain a positive attitude throughout this period. Although it can be a challenge at times, making time for exercise, proper nutrition, engaging with the CLL community, and building a strong relationship with their healthcare team can help patients continue to live their life with minimal anxiety.3
- Davis LE. Watchful waiting approaches for CLL patients. Patient Power. Published July 21, 2020. https://patientpower.info/chronic-lymphocytic-leukemia/treatments/watchful-waiting-approaches-for-cll-patients. Accessed March 1, 2021.
- Eek D, Blowfield M, Krogh C, et al. Development of a conceptual model of chronic lymphocytic leukemia to better understand the patient experience. Patient. 2021;14:75-87.
- Patient Power. Living with CLL: monitoring symptoms during watch and wait. Published December 3, 2020. https://patientpower.info/living-with-cll-monitoring-symptoms-during-watch-and-wait/#read-transcript-anchor. Accessed March 1, 2021.