Managing Uncertainty: How Doctors Help Patients Cope With a Chronic Lymphocytic Leukemia (CLL) Diagnosis

“First of all, they have to understand definitely the risk, because not all CLL is the same,” Dr. Yaghmour tells SurvivorNet. “There is bad CLL, there is good CLL.”

Expanding, he describes CLL as one of the more favorable cancers to be diagnosed with: “If I choose to have leukemia, maybe I would like to have this type of leukemia.”

His framing stems from the notion that more than half of CLL patients have no symptoms at the time of diagnosis and don’t require any treatment right away. But the risk profile varies substantially from patient to patient, driven largely by genetic and molecular features of the disease — such as specific chromosomal changes — that doctors test for early on.

The Emotional Whiplash of Diagnosis

Despite that relatively favorable overall picture, Dr. Yaghmour explains that most patients don’t experience it that way at first.

“The problem is the patient gets diagnosed with leukemia. At the beginning, they go through the phase of, like, oh my gosh, I have leukemia, I’m dying,” he says.

Studies on CLL patients, including published research in “General Hospital Psychiatry,” a peer-reviewed medical journal, have found that anxiety, depression, and other mental health concerns, are common in the period soon after diagnosis. These feelings develop before treatment even begins (if needed), when the disease can feel especially uncertain and frightening as patients are still learning what their diagnosis means.

From Fear to Education

Dr. Yaghmour says the path out of that initial shock runs through education.

“Then the education, the reassurance, the risk stratification, because you have to calculate the different categories of risk, including the cytogenetics changes, and then the indication to start treatment,” he explains.

This process — evaluating genetic and molecular markers to determine a patient’s risk category and whether treatment criteria have been met.

Setting Honest Expectations About Treatment

One of the most important — and difficult — conversations, according to Dr. Yaghmour, is about what treatment can and can’t accomplish.

“Are we curing this or monitoring? Or are we just putting the patient or the leukemia itself in remission, and we maintain that as long as we can,” he says.

This is an accurate and important distinction to make clear to patients: with standard, non-transplant therapy, CLL is not considered curable.

The disease can be pushed into deep remission — sometimes for years — but it isn’t eliminated. The only treatment with true curative potential is allogeneic stem cell transplant, a procedure in which healthy blood-forming stem cells from a matched donor are infused to rebuild bone marrow that has been damaged or destroyed by disease or treatment, and that option carries substantial risks and is only appropriate for a carefully selected group of patients.

For the large majority of people with CLL, the realistic and still very positive goal is long-term disease control, not cure.

Dr. Yaghmour emphasizes that this conversation has to be honest in both directions — not falsely reassuring, but also not needlessly alarming.

“It’s very important to start with very good education, explaining the expectation, reassuring the patient not falsely that there are cases that have a best-case scenario and there is a worst-case scenario,” he says.

Staging CLL

CLL is classified using something called the Rai staging system (some clinicians use the Binet staging system, but Rai is more common in the United States). Determining the stage helps doctors figure out the best course of treatment, or if treatment is even necessary at the time of diagnosis (this is called watchful waiting).

The Rai system divides CLL into 5 stages based on the results of blood tests and a physical exam:

Stage 0: No enlargement of the lymph nodes, spleen, or liver, with red blood cell and platelet counts near normal.

Stage I: Lymphocytosis with enlarged lymph nodes, though the liver and spleen are not enlarged, with red blood cell and platelet counts near normal.

Stage II: Lymphocytosis with liver and/or spleen enlarged; lymph nodes may or may not be enlarged, and red blood cell and platelet counts are still near normal.

Stage III: Lymph nodes, liver, or spleen may or may not be enlarged; red blood cell counts are low, which is considered anemia, yet platelet counts are still near normal.

Stage IV: Lymphocytosis with enlarged lymph nodes, spleen, or liver; there may be too few red blood cells, and platelet counts are low, which is known as thrombocytopenia.

Once your doctor goes over the results of your blood work and any other tests performed, they will assess your stage, and — depending on whether or not you are presenting any symptoms — will carefully determine the best plan for you moving forward.

Making Treatment Decisions Together

The doctor-patient relationship itself is one of the most important facets of a CLL patient’s cancer journey.

“We have to go over in detail the option of treatment because we are not choosing for our patient. We are choosing with our patient.”

This reflects a formally recognized model in cancer care known as shared decision-making — a collaborative process in which doctors and patients arrive at treatment decisions together, combining clinical evidence with the patient’s own values and preferences.

This approach is considered particularly important in oncology, where treatment choices often involve genuine trade-offs between quantity and quality of life, and where patients consistently report wanting to be true partners in the decision rather than simply told what to do.

The Takeaway for Patients

For patients newly diagnosed with CLL, Dr. Yaghmour’s approach suggests a clear path through the initial fear: understanding that CLL’s risk varies enormously from person to person, getting an honest and detailed risk assessment, and working with — not just being directed by — a care team that is transparent about both the best- and worst-case possibilities.

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