Counseling Patients With Newly Diagnosed CLL


Staging criteria used in the diagnosis of chronic lymphocytic leukemia, and recommendations for talking with patients about molecular testing results and goals of therapy.

Anthony Mato, MD, MSCE: Of course, we get all these results back. Some are complicated. We do detail next-generation sequencing, we do FISH [fluorescence in situ hybridization], cytogenetics, IGHV testing—they’re obviously confusing to patients. What do you think is the best approach, Kristen, for how we discuss these results with patients?

Kristen Battiato, AGNP-C: The best approach is to keep it simple and let the patient guide you in how detailed you’re going to get. If they have high-risk features, it doesn’t change anything we’re going to be doing with them. We’re just going to watch them a little more closely. If they require therapy, they may progress a little sooner, on average, than other patients with CLL [chronic lymphocytic leukemia].

Anthony Mato, MD, MSCE: Is it over the phone? Is it in person? What’s your best approach to this?

Kristen Battiato, AGNP-C: Obviously, I prefer in person. But if the patient isn’t coming back for 3 months and is anxious, I will happily get on the phone and go over this with them in good detail.

Anthony Mato, MD, MSCE: You mentioned what we perform in terms of history, physical examination, CBC [complete blood count]. That’s more than enough information to stage a patient. I should mention the staging system. In the United States, we use the Rai staging system for CLL. Most patients are presenting with a lymphocytosis, so it’s more about the leukemia staging system—the Rai staging system—than it is for the analogous lymphoma staging, which would be the Ann Arbor stage.

Rai has 5 stages. Stage 0 is lymphocytosis. You need to have more than 5000 circulating malignant B cells to make that cutoff for CLL vs SLL [small lymphocytic lymphoma], which is the lymphomatous version of this disease. Stage I would be the presence of palpable lymphadenopathy on physical examination. I want to strongly emphasize: it’s not mandated that every patient to get a CT [computed tomography] scan or a bone marrow biopsy at the time of diagnosis. Stage II would be the presence of splenomegaly on physical examination. Stage III is the presence of anemia, not attributable to something else. Just because you are anemic, with hemoglobin less than 11 g/dL, and you have CLL, doesn’t necessarily mean you don’t have vitamin B12 or folic acid deficiency, iron deficiency, thyroid disease, or hemolysis. You need to rule out alternative explanations for anemia before you automatically attribute that to CLL and stage, and the same for thrombocytopenia, which would be stage IV.

It’s a 5-part staging system. It’s really important. I’m sure you would agree with me that we don’t say you have stage IV disease, because that sets off all kinds of alarms in a patient’s head about what that might mean—they think of friends or family who have had stage IV breast cancer, or lung cancer, or colon cancer. Would you agree, Kristen?

Kristen Battiato, AGNP-C: Absolutely. There’s a lot of anxiety, and we need to normalize a lot of their anxieties, give them hope, and show them that this can be managed if they need therapy on an outpatient basis, and they can have good quality of life.

Transcript edited for clarity.

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