It’s always difficult to learn that you have cancer, but it might be particularly surprising when you feel completely fine. It might be even more surprising to learn that you don’t need treatment for your cancer, at least not now. But that’s often the reality for people newly diagnosed with chronic lymphocytic leukemia (CLL).
CLL is often diagnosed after routine blood work that might be done as part of your annual physical, and by the time the disease is detectable in your blood, you may have had it for years. That can also be nerve-wracking, because for most cancers, early detection is important for effective treatment. CLL is a bit of an exception, says UNC Health hematologist and oncologist Deborah Stephens, DO, who specializes in the treatment of CLL.
“Many people diagnosed with CLL never need treatment,” she says, noting that more than 200,000 people in the United States are living with the disease.
There is currently no cure for CLL, but that’s not a reason to lose hope.
“I tell people, this is not a diagnosis where you can go to Vegas and gamble your life savings away,” Dr. Stephens says. “You will need that money, because we can help you be here for your normal lifespan.”
What is Chronic Lymphocytic Leukemia?
CLL is a slow-growing blood cancer.
“It’s a cancer of a white blood cell called a lymphocyte, which helps the immune system make antibodies to fight viral and bacterial infections,” Dr. Stephens says. “When they turn into cancer, these cells multiply and don’t die. They circulate throughout the blood or accumulate in the lymph nodes.”
It usually takes a while for the cancerous lymphocytes to cause symptoms, and your doctor may be able to diagnose the disease based on a blood test before you have any symptoms.
Sometimes, people with CLL have noticeably swollen lymph nodes or an enlarged spleen that makes them feel uncomfortably full after eating.
Eventually, the immune system can become affected, and you might have more infections that are harder to recover from. You might experience fatigue, fever, drenching night sweats and unexplained weight loss.
Next Steps After a CLL Diagnosis
After CLL is diagnosed, your hematologist-oncologist will order additional blood tests to see if you have certain genetic mutations (TP53 or IGHV), as these can influence the treatment that will be best for you. These results can also give your doctor an idea of when you might need your first treatment.
You will not need treatment if you’re not experiencing any symptoms and your other blood counts are normal.
“We recommend periods of observation where we check to see if the white blood count remains stable, and as long as it’s not increasing rapidly and no other symptoms develop, we continue to watch and wait,” Dr. Stephens says.
That said, you will be advised to take some steps to improve your overall health after diagnosis.
“You’re more likely to get infections, and infections will last longer and be more severe, so I recommend a panel of vaccines to prevent these infections, including influenza, COVID-19, pneumonia, shingles and RSV,” Dr. Stephens says.
A CLL diagnosis can increase your risk for other cancers because the immune system plays a role in preventing cancer.
“Skin cancer is the most common secondary cancer, so it’s important to have a dermatologist and get regular skin exams,” Dr. Stephens says. “You also need to get all age-appropriate cancer screenings: mammograms for breast cancer, prostate-specific antigen blood testing for prostate cancer and colonoscopies for colorectal cancer. If you have a history of smoking, you’ll need a screen for lung cancer.”
It’s also important to pay attention to the healthy habits that keep you well—exercise, a balanced diet, adequate sleep and stress management.
“You want to do all the things that support the immune system so you don’t get an infection, and so you’re as strong as possible if you do need treatment,” Dr. Stephens says. “We have data that shows that regular physical activity and lower levels of stress can lower counts of cancerous lymphocytes in patients with CLL.”
Your doctor will talk to you about the symptoms that should raise a red flag, such as night sweats, fever, unexplained weight loss and a feeling of abdominal fullness.
And there is one rare complication to be aware of: “CLL can change over into an aggressive form of lymphoma in what’s called a Richter transformation,” Dr. Stephens says. “If you notice rapid growth of lymph nodes, tell your doctor.” There are hundreds of lymph nodes in the body, but they’re most noticeable in the neck, armpit and groin.
Treatment Options for CLL
You may need treatment if you are experiencing symptoms or if your doctor determines that your blood count is changing rapidly.
“We have evolved out of older, nonspecific chemotherapy drugs to targeted treatments with minimal side effects,” Dr. Stephens says.
To begin treatment, your doctor will consider a continuous option (a medicine that you continue to take until it stops working) or a time-limited treatment, when you take a combination of drugs for a set period of time and then go back to observation. The best method will depend on your overall health and any genetic mutations identified at diagnosis.
“With first-time therapy, over 90 percent of people have a good response,” Dr. Stephens says.
Still, these therapies are not cures, so in time, cancerous lymphocytes will start to accumulate again, causing a relapse. At that point, you may switch from one treatment to the other, or your doctor may recommend a clinical trial. CAR T-cell therapy, in which a person’s own immune cells are programmed to destroy cancer cells, is currently approved for CLL after two or more instances of relapse, and Dr. Stephens is hopeful options will continue to improve in the near future.
“There are a lot of great drugs in development for CLL right now,” she says. “The discussion about treatment will likely be very different two years from now than it is for a person who needs treatment today. We’re looking at new drugs, ways to combine currently available drugs for better effects and how to make CAR T-cell therapy more effective.”
Some of the treatments being investigated may prove to be cures for CLL, Dr. Stephens says.
If you’re newly diagnosed, you may benefit from connecting with a support group. If you live in an area without a doctor who is an expert in CLL, the CLL Society can connect you to an expert virtually or help you find a clinical trial.
“I want people to know they’re not alone, and there are doctors there to answer your questions,” Dr. Stephens says. “It’s important to have hope, because there’s a lot of research going on that’s really promising. So many people are working for a cure for CLL.”
Talk to your doctor about blood work and cancer screenings you need, or find one near you.