Active surveillance for chronic lymphocytic leukemia

When you're diagnosed with chronic lymphocytic leukemia (CLL), you may start with a type of treatment called active surveillance and not need to start active treatment right away. This is because CLL often grows slowly and may not cause problems at first. Over time, CLL cells collect in the blood, bone marrow, lymph nodes and spleen. It may take a long time for this to cause any problems, and it may not be causing you any problems when you're first diagnosed.

Active surveillance means that your healthcare team monitors the cancer closely for changes rather than giving treatment right away. You will have tests and physical exams to check if CLL is progressing or your condition is getting worse. The goal during this time is to maintain your quality of life or make your quality of life better. Active surveillance may also be called active observation or watch and wait.

Active surveillance helps avoid side effects that can happen with treatments like targeted therapy or chemoimmunotherapy. Research tells us that starting these treatments before there are certain signs of disease progression doesn't help people live longer.

Your healthcare team may include your family doctor, an oncologist (a doctor who diagnoses and treats cancer) or a hematologist (a doctor who diagnoses and treats blood cancers). Or it may include a nurse practitioner or a physician assistant.

Along with monitoring the cancer closely, your healthcare team will support and encourage you to do what you can to stay healthy during this time. When you are under active surveillance for CLL, it's important to tell them right away if you notice any changes to your body or how you feel. Active treatment starts when you develop symptoms or when there is disease progression.

During active surveillance, your healthcare team uses tests and exams to check if CLL is progressing or your condition is getting worse. You and your healthcare team will decide together what the timing intervals between the tests should be. Tests you may have during active surveillance are:

• a physical exam, including feeling the lymph nodes or spleen to see if they are larger in size
• blood tests, including complete blood count

Your healthcare team also looks for and treats other symptoms of CLL, like infections and second cancers.

CLL weakens your immune system, which increases your risk for infections. Even if you feel fine, your immune system is not as strong as it was. You will need to be up to date on all of your immunizations. These include COVID-19, influenza (flu), pneumonia, hepatitis and shingles.

If you keep getting infections, it may mean that you need to start active treatment for CLL.

Before starting, your doctor may recommend that you have immunoglobulin replacement therapy. Immunoglobulin replacement therapy helps to raise the level of immunoglobulins (also known as antibodies) in the blood to help fight infections. To have this therapy, you will need to meet certain criteria set by your province or territory.

You can receive a blood product transfusion of immunoglobulins either through a needle in a vein (called intravenous immunoglobulin, or IVIG) or through inserting a needle just under the skin (called subcutaneous immunoglobulin, or SCIG).

Immunoglobulin replacement therapy may also be used after treatment to help raise the antibody levels in your blood to help your immune system recover.

CLL affects the immune system. So when you have CLL, you're at an increased risk for other cancers.

Non-melanoma skin cancer is the most common second cancer diagnosed in people with CLL. As part of your active surveillance plan, your doctor will likely check your skin regularly. There are also many things that you can do to reduce your risk of skin cancer and be sun safe.

It's also important to follow screening guidelines for breast, cervical and colorectal cancer in your province or territory. Talk to your doctor about screening for cancer and the different ways of finding cancer early.

Knowing that you have CLL but that you won't start active treatment right away may make you feel anxious or worried. Many people feel more comfortable as they start to better understand all that the healthcare team does to watch for signs of disease progression. There are other helpful things that you can do for your health and well-being during active surveillance.

• Keep your body as healthy as possible by being physically active, eating well, not smoking and limiting alcohol.
• Attend all of your medical appointments, even if you feel well and don't think your condition has changed.
• Tell your healthcare team if you start to feel fatigue (extreme tiredness or lack of energy) or have night sweats, unexplained fever or weight loss.
• Seek out support from your healthcare team, family, support group or someone who is also going through active surveillance if you are feeling stressed, worried or uncertain about the future. Your mental health is important.