Confirming a Diagnosis of CLL


Transcript: Nicole Lamanna, M.D.: Welcome to CURE Expert Connections®. I’m Dr. Nicole Lamanna, associate professor of medicine at Columbia University [Irving] Medical Center. I’m a leukemia expert, and I’m here today with one of my patients, Danise Hoover, to talk about CLL [chronic lymphocytic leukemia]. I think one of the things that is important to know is that this is a chronic leukemia. And people, when they come to see me initially or another leukemia doctor, often get diagnosed routinely. In other words, their internist or their primary care doctor might notice that their blood counts are abnormal and often request them to come back into the office and do repeat bloodwork. Sometimes they’re not sure if the patient might have a virus or an infection. Another very common way this diagnosis is made is that they may be getting some elective surgery and they do bloodwork, and they notice the bloodwork is abnormal.

When we talk about why the bloodwork is abnormal, we’re really referring to the white blood cell count. Because this is a leukemia, this is a blood disorder, we’re really talking about the lymphocytes being mildly elevated. And so it’s picked up most commonly incidentally, and the patients don’t know that there’s something wrong typically. That’s not everybody, but the majority of patients who get diagnosed get diagnosed incidentally. And then eventually, they’re told to see a hematologist/oncologist for further workup, or sometimes they’ll send off the initial bloodwork and then tell them the diagnosis and send them off to a specialist.

So this is a common leukemia. When we talk about leukemias and other blood disorders in general, chronic lymphocytic leukemia, or CLL, happens to be one of the most common leukemias to have. Now, even though we say it’s common, it’s really not common when we talk about other cancers. So when you talk about solid tumor cancers—breast, lung, colon, or other cancers that are what they call solid tumors—the blood cancers are sort of rare. In general, the incidence of all the leukemias is only about 5% of the total incidence of cancer. So the blood disorders in general are rare, but CLL happens to be the most common of the leukemias.

Now, some people are told they have small lymphocytic lymphoma [SLL]. CLL and SLL are really the same disorder. Sometimes we’re not very precise. What we’re referring to is the same disorder. It’s just that when we say small lymphocytic lymphoma, we’re referring to somebody who’s got lymph node involvement and really doesn’t have blood problems or bone marrow problems. Whereas, CLL patients can have lymph node involvement and bone marrow involvement, and so it’s picked up on the bloodwork. But if you look at those cells under the microscope, it’s the same disease. So I don’t want patients to get confused when we talk about CLL or SLL. They’re really the same. Danise was diagnosed with chronic lymphocytic leukemia. Danise, do you remember how you presented?

Danise Hoover: Well, I think I was really lucky. My disease was caught probably as close to the beginning as it could have been. I was a regular blood donor. I gave blood in August, and I got the diagnosis of CLL in December. But the blood donation found nothing abnormal in my blood counts. So it was way at the beginning that I got the diagnosis.

Nicole Lamanna, M.D.: And it was your internist or your primary care doctor?

Danise Hoover: It was my regular primary care doctor. I went in for a regular checkup and he’s the one that caught it.

Nicole Lamanna, M.D.: And that’s very common. When we talk about that, that’s exactly how the majority of patients with CLL get diagnosed. Their physician sends their routine bloodwork in addition to their blood counts, their chemistries, the cholesterol, and of all the annual things that most primary care or internists do on a routine basis. They noticed that the white blood count is a little elevated. And so, he’s the one who first picked this up?

Danise Hoover: That’s right.

Nicole Lamanna, M.D.: And what did he say to you?

Danise Hoover: He did exactly what you suggested. He said come in, we’ll run it again, and we did that. And after they ran it the second time, he said that I needed to come see him and I should bring my husband with me this time. And that’s when he gave me the diagnosis. He gave me a good explanation of what it was, what CLL was, and what to expect from it. He had his own sense of experience because he’s a hematologist as well. He was very optimistic. He said that most people die with it, rather than from it, and he said that it could be 20 years before I would need treatment. That was very encouraging to me. It was something that could live in the background. It was something that I could cope with.

Nicole Lamanna, M.D.: So this at least sounds like your internist was somebody who could talk to you a little bit about your initial diagnosis, which is great.

Danise Hoover: Right. He was very knowledgeable. He was very encouraging and soothing. He was the one who encouraged me to find a specialist.

Nicole Lamanna, M.D.: Which we’re going to talk about more, absolutely. So there are about 20,000 new patients diagnosed with CLL every year in the United States. Obviously, because it is a chronic blood disorder, there are several hundreds of thousands of patients who live with CLL on an ongoing annual basis. Again, they’re living with this chronically. So there are lots of folks, which is why this is a very common leukemia in that sense. Even though there’s only a small amount who are newly diagnosed every year, there are people living with this for years and years. That’s why there are so many patients.

I think the other important point to talk about is that there are some individuals similar to what Danise noted. She thinks it was relatively shortly after her routine … meaning diagnosed very early. But there’s no doubt that there might be individuals who didn’t know that they had CLL prior. Maybe they had medical care earlier on and they didn’t know. Maybe they hadn’t been seeing an annual physician, and so they didn’t have bloodwork done earlier. And so, they might not have known that they’ve had CLL. Or they go back and we look at their bloodwork from 10 years before and we go, “Hmm, it might have started. Your lymphocyte count was a little elevated.” They just never knew. That tells us a little bit about how long they might have been living with CLL. Does that change anything? It just means that they didn’t know about it. Some of my patients will say, “I’m glad I didn’t know.” Others will go, “I wish I would have known earlier,” although it doesn’t necessarily change what they would have done prior to that. It’s just that they didn’t know that they might have had this diagnosis for a lot longer than when they actually got diagnosed. So sometimes that does happen.

As I said, there are other common ways that we will diagnose patients besides routine bloodwork, which Danise did. There may have been preadmission testing for something, or maybe a patient might notice a lymph node and eventually go see a doctor and have a biopsy of the lymph node. For women, sometimes they’re picked up on mammography. So they’ll get their routine annual mammogram and some lymph nodes are picked up on the mammogram, and then they eventually get a biopsy that way. So those are the most routine ways that patients are diagnosed with chronic lymphocytic leukemia.

Transcript Edited for Clarity

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