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You've learned that you have chronic lymphocytic leukemia (CLL). What happens now? The sheer volume of new information your oncologist is sharing with you can seem overwhelming. Take a deep breath, give yourself time to regroup, and start to figure out your next steps.

CLL is cancer, but it's different from other kinds of cancer. Unlike breast cancer or lung cancer that you need to treat right away, CLL grows slowly. It may be OK to hold off  on treatment until symptoms appear or the cancer grows.

Once you do start treatment, it won't have an end date. CLL usually can't be cured with a few rounds of chemo or targeted therapy. It's a chronic, or lifelong, disease.

You'll learn to manage your cancer and its symptoms throughout your life. You might say that life with CLL is a marathon, not a sprint. The first step of that marathon involves learning about your cancer and your treatment options.

You've Been Diagnosed: Now What?

After a diagnosis, your doctor will let you know what type of CLL you have. They may do more tests (like an X-ray, CT scan, or PET-CT scan) to see if (and if so, where) the cancer has spread. This information can be critical because it can determine the course of treatment – and your outcome. 

This is an important time to ask all the questions you want, because you’ll need to come up with a plan together. Your questions and the expertise from your doctor(s) can help you make important decisions about how to manage your CLL. It's important to understand what treatments are available to you. Knowing what you're dealing with will make you feel more in control of your own health.

Your treatment team can answer any questions you have. Read up on CLL all you can to help you come up with the right questions to ask. Organizations like the American Cancer Society and the Leukemia & Lymphoma Society are good places to start your search for information.

Bring a notebook or tablet to your medical appointments to keep track of all the new information you’ll receive. You might even want to bring a friend or relative with you to help you remember what your doctor said or to help take notes.

 

CLL Basics

As your doctor will explain, leukemia is a blood cancer. The specific kind of leukemia you have, CLL, starts in lymphocytes – cells in your bone marrow that help your body fight infections. In CLL, lymphocytes multiply so quickly that they leave less room for other important blood cells, like red blood cells that carry oxygen and platelets that help your blood clot.

There are two main types of CLL. One type grows so slowly that you might not need to do anything but watch it for years. The other grows quickly and needs treatment right away. Your cancer doctor will tell you which type you have.

Learning Your Cancer Stage

After a CLL diagnosis, the next step is to learn the stage – or how far your cancer has spread. Your doctor will use the results of your blood tests and imaging scans to stage your cancer. Knowing your stage will help the doctor decide what treatment, if any, you need.

Most blood cancer doctors in the United States determine the stage of a patient’s CLL based on the Rai system. It divides CLL into five stages – 0 through IV. The higher the stage, the more enlarged your lymph nodes and spleen are, and the faster your cancer is growing.

Stage 0 is a low-risk cancer. Your red blood cells and platelets are close to normal, and your cancer is growing slowly. Stages I and II are intermediate-risk cancers. Stages III and IV are high-risk cancers. High-risk cancers cause a drop in red blood cells and platelets, plus swelling in your lymph nodes and spleen.

Genetic tests tell your doctor even more about your cancer and how they can expect it to act. Some genes make CLL grow more quickly. Others make the cancer respond better to certain treatments than to others.

Your Treatment Timing and Plan

The CLL stage and your genes aren't the only things that go into planning your treatment. Your overall health, goals, and preferences are also important to consider. You're the one who will have to live with any side effects from treatment or any anxiety if you wait to start treatment.

If your CLL is in an early stage, it actually may be better to watch and wait. Research shows that people in earlier stages of CLL may not benefit from starting treatment right away. Waiting is often part of the plan for low-risk CLL. You may avoid the side effects of treatment for a while if you hold off until your cancer starts to grow or causes symptoms. Your treatment team will monitor you closely while you wait. They call this watchful waiting or active surveillance. Some people live years without needing treatment. Ask your doctor how often you should visit and/or have bloodwork done as you keep tabs on your condition. Make sure to stick to your appointments so you can closely monitor your condition.

If you have a high-risk cancer, or you waited and your cancer has started to grow, you have a few choices. Different combinations of targeted drugs, chemotherapy, and sometimes radiation or surgery can be part of CLL treatment. Make sure you understand how each treatment works and the side effects it might cause before you decide on a plan.

There’s even a test to help you see if you can benefit from a specific treatment. A lot of people do not get this testing and wind up going on a treatment that doesn’t work – and they could have known before they started treatment.

How to Plan for CLL Treatment

Oncologists stay on top of the latest in cancer care, so they can be a great resource to learn about the latest treatments (and treatments on the horizon). CLL treatments can include chemotherapy, immunotherapy, targeted medications, or a bone marrow transplant (also called a stem cell transplant). They can also include a combination of any of those. Radiation and surgery may also be options.

Remember that there are sometimes multiple options when it comes to the way you treat CLL. For example, ask about which medications may be best for you. Your doctor can also give you information about treatments that are coming soon as well as clinical trials.

In addition to questions about what kind of treatment you should have, you can also ask your oncologist:

  • Is there anything I should be doing to get ready for treatment? 
  • How will we know if the treatment is working?
  • Will I have any limitations during treatment?
  • What happens if the treatment isn’t working or the cancer returns?

If your CLL treatment isn’t working well, all hope isn’t lost. That’s when you’ll need to talk to your doctor and ask about other options.

How to Advocate for Yourself

At first, it might seem like your doctors are speaking a different language. But once you learn more about CLL, the terms will become more familiar, and you'll feel more comfortable discussing your care.

Take an active role in your treatment. Advocating for yourself is important throughout your cancer journey. That means you shouldn't be afraid to tell your medical team when something doesn't feel right or to ask to try something different than what they suggested.

Ask for a second opinion if you don't agree with the next steps in your treatment plan. Most doctors will encourage you to get a second opinion. Your doctor might even refer you to another leukemia specialist. You can also join a CLL support group and talk to other people about their treatment experience.

How Can My Care Team Help?

If you have CLL, you probably have more than just one doctor at your disposal. While your oncologist may be the best person to go to with clinical questions, don’t hesitate to reach out to nurses, social workers, and other members of your care team for other concerns. They can answer questions or put you in touch with the right person to ask.

Next Steps

What happens next depends on the plan you've chosen with your medical team. If tests show that your cancer is low risk, your team will check you at regular times for signs that your cancer has grown. For a high-risk cancer, you may start on treatment right away.

Make sure you have good support through this process. A cancer diagnosiscan be life-changing, especially when your cancer will be with you for life. Lean on your treatment team, friends, family, and support group. If you feel overwhelmed, talk to a therapist or other mental health provider.

Show Sources

Photo Credit: Sam Edwards / Getty Images

SOURCES:

American Cancer Society: "How Is Chronic Lymphocytic Leukemia Staged?" "If You Have Chronic Lymphocytic Leukemia," "Living as a Chronic Lymphocytic Leukemia Survivor," "Questions to Ask About Chronic Lymphocytic Leukemia," "Typical Treatment of Chronic Lymphocytic Leukemia."

Cancer.Net: "Leukemia – Chronic Lymphocytic – CLL: Diagnosis."

Fox Chase Cancer Center: "Four Reasons to Get a Second Opinion for Leukemia."

Stanford Children's Health: "Chronic Lymphocytic Leukemia (CLL): Stages."

Leukemia & Lymphoma Society: "Watch and Wait."

National Cancer Institute: “Chronic Lymphocytic Leukemia Treatment (PDQ) – Patient Version,” “Platelet.”

Mayo Clinic: “Chronic Lymphocytic Leukemia.”

CLL Society: “TB4T! One of the Most Important Things You Can Do,” “What Doctors Say About Test Before Treat.”