CLL and Swollen Lymph Nodes: What You Need to Know

CLL is usually a slow-growing disease and can remain stable for years without the need for any treatment. While the appearance of swollen lymph nodes could mean that cancer has started to progress, there are other reasons that lymph nodes swell.

“Most swollen lymph nodes are not caused by leukemia or lymphoma,” says Jennifer Wilson, LCSW, a senior information specialist at Blood Cancer United. “However, lymph nodes that remain enlarged, continue to grow, become painful, or otherwise cause concern should be evaluated by a healthcare provider.”

Here’s what you need to know about swollen lymph nodes in CLL.

Why CLL Causes Swollen Lymph Nodes

Lymph nodes are small, bean-shaped structures that play an essential role in the immune system. You have anywhere from 400 to 800 lymph nodes throughout your body, connected to one another by a complex system of lymphatic vessels. They filter fluid (lymph) in your body to remove bacteria, viruses, and other invaders.

“In CLL, abnormal B cells don't just build up in the blood and bone marrow but also collect in lymph nodes, where they proliferate and gradually enlarge them,” says Jay Yang, MD, a hematologist and medical oncologist at the Barbara Ann Karmanos Cancer Institute in Detroit.

Common Places for Swollen Lymph Nodes in CLL

Nodes located inside your chest or abdomen can also enlarge. These may not cause obvious swelling, but you can have other symptoms.

“Lymph nodes in deeper parts of the body can press on vital organs, such as nodes in the chest pressing on the airways or nodes in the lower torso pressing on the kidneys or urinary tract,” says Anjali Sibley, MD, MPH, a clinical associate professor of medicine (oncology) at Stanford University School of Medicine in Stanford, California, and the director of the Stanford Medicine Cancer Center in Emeryville, California. “This can lead to organ-specific symptoms such as shortness of breath or persistent coughing.”

Other pressure-related symptoms in the abdomen include fullness and mild bloating.

What CLL Lymph Nodes Feel Like

“CLL lymph nodes are typically painless, firm but rubbery and not rock-hard, and freely movable under the skin rather than fixed in place,” says Juan Alderuccio, MD, associate professor of medicine at the University of Miami Miller School of Medicine in Florida. “They tend to grow slowly over weeks to months, and it's common for nodes to be enlarged symmetrically on both sides of the body and in more than one region at once.”

With an infection, Dr. Alderuccio says that the swelling usually comes on quickly and is limited to one area near the infection. The nodes are painful to the touch and may feel warm or look inflamed. “They also tend to shrink back to normal within a couple of weeks as the infection resolves, whereas CLL nodes don't,” he says.

How Swollen Lymph Nodes Are Managed and Treated

• High fever
• Night sweats
• Unexplained weight loss
• Extreme fatigue

Your doctor can do blood and other tests to help decide if it’s time to move from a stage called watchful waiting to active treatment.

“Treatment options vary based on the patient's overall health and disease characteristics but commonly include targeted therapies such as Bruton tyrosine kinase inhibitors or BCL-2 inhibitors, which are sometimes used in combination with antibody-based therapies,” says Tulio Rodriguez, MD, a hematologic oncologist and the director of the bone marrow transplant and cellular therapy program at City of Hope Cancer Center in Chicago.

When to Call Your Doctor

People with CLL can have temporarily enlarged lymph nodes for reasons other than disease progression. “For example, if someone has an ongoing or recent upper respiratory infection, then they may have some enlarged lymph nodes in the neck region, which will eventually subside after the infection resolves,” says Yang.

Dr. Sibley says not to wait until your next appointment if you have:

• Lymph nodes that are growing rapidly
• Night sweats
• Disabling fatigue
• Persistent and unexplained weight loss
• Fevers
• Bruising or abnormal bleeding
• Shortness of breath
• Chest discomfort

“A lymph node that suddenly becomes very hard, fixed in place, and rapidly enlarging, especially associated with high fevers, drenching night sweats, or marked weight loss, can signal transformation into a more aggressive lymphoma called Richter’s transformation,” says Alderuccio. “This should be evaluated urgently.”