What You Should Know
- A chronic lymphocytic leukemia (CLL) diagnosis often comes as an unexpected finding on routine bloodwork, and Dr. Farrukh Awan, at UT Southwestern Medical Center, emphasizes that confirming the disease, identifying its genetic and biological features, and assigning a risk category is a multi‑step process that guides everything that follows.
- Unlike many solid cancers, CLL stage is not the only factor guiding care. Doctors also consider symptoms, blood counts, how quickly the disease is changing, and genetic features that can predict how CLL may behave and which treatments may work best.
- Many newly diagnosed patients begin with active surveillance rather than treatment, since decades of research show no survival benefit to treating early‑stage, asymptomatic CLL — though higher‑risk or symptomatic patients may require immediate therapy based on their clinical presentation and preferences.
A lot of times they go in “for regular blood work,” and they are found to have this slow-growing type of blood cancer.
Read MoreWhy Stage Is Only One Part of Understanding CLL
While many cancer types are divided into “stages” based on how advanced the disease is at a given point in time, Dr. Awan says that’s not necessarily a useful measure.
“While we do have staging in blood cancers, we don’t necessarily put a lot of weight on it,” Dr. Awan says.
“There are a lot more sophisticated tests that we can do, which are much more specific and also much more predictive of how that particular patient is expected to behave.”
This reflects how CLL treatment guidelines actually work: treatment initiation follows the Rai and Binet staging systems (tools used to classify CLL), but current criteria emphasize active disease rather than stage alone. Instead, oncologists increasingly rely on molecular risk tools — incorporating factors like TP53/17p deletion status and IGHV mutation status — to predict how a patient’s disease is likely to behave and guide decisions about treatment timing, according to the New England Journal of Medicine.
Dr. Awan also points out a key difference between blood cancers and solid tumors.
“The concept of, ‘ Will this cancer spread? Will this cancer metastasize? That’s not a relevant concept for us since this is a blood disease and blood is everywhere. So by definition, it’s all over the body.”
Leukemias circulate through the blood, bone marrow, and lymphatic system from the outset, unlike organ-specific solid tumors such as breast or colon cancer, which are staged based on regional or distant spread from a single site.
Expert Resources for CLL Patients
- CLL Treatment: The Side Effects to Expect & Why Reporting All New Symptoms is Crucial
- CLL Treatment Decision Making — Exploring All Your Options To Find What’s Right For You
- CLL Treatment: What Side Effects Can I Expect From BTK Inhibitors?
- CLL is Not Considered Curable So Treatment May Resume Years Later
Why ‘Watch and Wait’ Isn’t the Same as ‘Doing Nothing’
Dr. Awan explains that one of the hardest concepts for newly diagnosed patients to accept is that a CLL diagnosis doesn’t automatically mean starting treatment.
“A lot of times we don’t need to do anything,” he says. “It’s an incidental finding… what we call active surveillance or watchful waiting… just because you have a cancer doesn’t mean we have to treat it.”
Research including a landmark New England Journal of Medicine study of over 1,500 patients found that treatment of indolent CLL did not increase survival, whether patients were treated immediately or simply monitored. A subsequent meta-analysis of randomized trials reached the same conclusion, supporting no chemotherapy for most patients with early-stage disease… with no evidence of benefit from early inclusion of an anthracycline.
A 2025 review in the ASCO Educational Book confirms that early treatment in asymptomatic, high-risk patients has not shown an overall survival benefit, even with targeted therapies such as Bruton’s tyrosine kinase and BCL2 inhibitors, according to the New England Journal of Medicine.
“We’ve had early treatment for a long, long time now as an option, and multiple studies have been done that consistently show that patients who get treated early don’t necessarily live longer. And a small group of patients with this disease may never need treatment. So if we treat everyone, we are over-treating a subset of patients who may not need treatment, and they may die of old age,” Dr. Awan explained.
How Follow-Up Care Is Determined
Once a patient’s risk category is established, Dr. Awan says that shapes how often they need to be seen.
“Based on the risk score, we can then determine how soon we need to see you again. Do we need to see you every three months? Do we need to see you in six months or once a year?”
When Treatment Does Start Right Away
Not every patient is a candidate for watchful waiting.
“Obviously some patients would be very sick, and they would need to be treated right away, and that’s a completely reasonable thing,” Dr. Awan notes.
In those cases, additional workup is needed, and treatment decisions expand to include “options for treatment, patient preferences, convenience, and so on, and cost.”
Questions To Ask Your Doctor
- What stage is my CLL, and what does that mean for me?
- Do I need genetic testing?
- Do I currently meet the criteria for treatment?
- If I do not need treatment now, how often should I have appointments and blood tests?
- What symptoms or changes should I report between visits?
- Which findings would indicate that it is time to begin treatment?
- How would my genetic test results affect the treatment you recommend?
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