Chronic lymphocytic leukemia

First appointment

Your first appointment at the Fred Hutchinson Cancer Center is a time for you and your care team to meet. You will talk about your diagnosis, disease outlook and likely treatment. This visit is also a time for us to start getting to know you as a person. This helps us fit our recommendations to you. Together, you and your team will decide what needs to happen next.

We encourage you to bring a family member or friend to your first appointment (and any future visits).

Request an Appointment

What to Expect

Your first appointment usually lasts about one hour. Here’s what you can expect to happen.

Confirming your diagnosis

To check your chronic lymphocytic leukemia (CLL) diagnosis, an experienced Fred Hutch hematopathologist looks carefully at your pathology slides. (CLL is when cancer cells are found in the blood and bone marrow. Your diagnosis may actually be small lymphocytic lymphoma, or SLL, if cancer cells are found in the lymph nodes and spleen instead.)

It’s important to find out these details about your CLL. This helps your doctor predict how your disease might behave, if you need treatment now and which treatments are most likely to work for you.

Our hematopathologists may run more tests on your tissue sample to confirm your diagnosis or look for features of your CLL that matter for your care. At your first appointment, your doctor will have your results and go over them with you.

Talking about risk level

The decision to start treatment depends on certain things that tell us if your CLL is likely to get worse (high-risk disease). Your doctor will explain these factors, how we check them and what we know about your risk level.

One important tool in this process is the CLL International Prognostic Index (CLL-IPI). It uses several factors to come up with a score that can guide your treatment choices. These things include:

If you have certain gene changes (mutations) or missing genes (deletions)
Your blood cell levels
If any of your tissues or organs are enlarged
Your age
Disease-specific blood tests

Discussing your treatment

Based on your test results so far, your doctor will explain if we recommend starting treatment now — and why or why not. Even if you do not need treatment right now, we might have clinical trials that you want to think about. Some trials test new approaches (new drugs or new combinations of drugs) to care for people with low- or intermediate-risk CLL. If you do need to start treatment, your doctor will tell you which standard treatments or clinical trials we recommend for you. We want to make sure you understand all your options.

These appointments are also a time for you to tell us about yourself. Each patient and family has their own needs and preferences. We want to get to know you so we understand the best way to care for you.

Answering your questions

Starting with your first appointment (and after), we are here to answer your questions. We want you to know as much as you want to know about your disease, your treatment and how care happens at Fred Hutch. We invite you to bring a friend or family member with you to help keep track of your questions and the information that your team gives you.

We also encourage you to talk with your care team about your hopes and concerns. Knowing more about you helps your team recommend the right treatment for you.

Before you leave, we will make sure you know what is going to happen next and how you can reach us if you have questions later. We will also schedule your next visit.

Staging CLL

Staging means finding out how much CLL is affecting your body. Knowing the stage of your cancer helps your doctors predict if your disease will get worse and if you need treatment.

Stage The extent of a cancer in the body. Staging is usually based on the size of the tumor, whether lymph nodes contain cancer and whether the cancer has spread from the original site to other parts of the body. Staging Performing exams and tests to learn the extent of the cancer within the body, especially whether the disease has spread from where it first formed to other parts of the body. Performing exams and tests to learn the extent of the cancer within the body, especially whether the disease has spread from where it first formed to other parts of the body. It is important to know the stage of the disease in order to plan the best treatment.

Staging of CLL and risk level

For CLL, doctors use a staging system called the Rai system. Your Rai stage is based on the levels of your blood cells and if some organs are enlarged. This gives your doctor information about the risk that your CLL will get worse and need treatment.

Doctors use Roman numerals 0 (zero), I (one), II (two), III (three) and IV (four) to name the stages. Stage 0 is the least advanced, and stage IV is the most advanced. All stages can be treated.

Stage 0, low risk: You have a higher-than-normal level of lymphocytes in your blood.
Stages I and II, intermediate risk: You have a higher-than-normal level of lymphocytes in your blood. Your lymph nodes are larger than normal. Your liver or spleen is also larger.
Stages III and IV, high risk: You have a higher-than-normal level of lymphocytes in your blood. You do not have enough red blood cells or platelets. (Your lymph nodes, spleen or liver may or may not be larger than normal.)

Lymphocyte A type of immune cell that is made in the bone marrow and is found in the blood and in lymph tissue. The two main types of lymphocytes are B lymphocytes and T lymphocytes. A type of immune cell that is made in the bone marrow and is found in the blood and in lymph tissue. The two main types of lymphocytes (white blood cells) are B lymphocytes and T lymphocytes. B lymphocytes make antibodies, and T lymphocytes help kill tumor cells and help control immune responses. Platelet A tiny, disc-shaped piece of a cell that is found in the blood and spleen. Platelets help form blood clots to slow or stop bleeding and to help wounds heal. A tiny, disc-shaped piece of a cell that is found in the blood and spleen. Platelets are pieces of very large cells in the bone marrow called megakaryocytes. They help form blood clots to slow or stop bleeding and to help wounds heal. Having too many or too few platelets, or having platelets that do not work as they should, can cause problems. Checking the number of platelets in the blood may help diagnose certain diseases or conditions. Red blood cell A type of blood cell that carries oxygen in the body. Spleen An organ that is part of the lymphatic system. The spleen makes lymphocytes, filters the blood, stores blood cells and destroys old blood cells. It is on the left side of the abdomen near the stomach. Stage The extent of a cancer in the body. Staging is usually based on the size of the tumor, whether lymph nodes contain cancer and whether the cancer has spread from the original site to other parts of the body. Staging Performing exams and tests to learn the extent of the cancer within the body, especially whether the disease has spread from where it first formed to other parts of the body. Performing exams and tests to learn the extent of the cancer within the body, especially whether the disease has spread from where it first formed to other parts of the body. It is important to know the stage of the disease in order to plan the best treatment.

Staging tests

To figure out the stage of your CLL and predict the outlook for your disease, you may need blood and bone marrow tests and imaging tests.

Blood and marrow tests show your levels of lymphocytes, red blood cells and platelets.

Imaging tests show if lymph nodes or other organs are bigger than normal.

Blood tests to stage CLL

Blood tests to stage CLL include:

Complete blood count (CBC)
Peripheral blood smear
Immunophenotyping
Flow cytometry
Cytogenetic tests
Fluorescent in situ hybridization (FISH)
Polymerase chain reaction (PCR)
Beta2 microglobulin
Lactate dehydrogenase (LDH)

Bone marrow aspiration and biopsy

Some patients may need a bone marrow aspiration and biopsy. After numbing the area so there is no pain, a doctor uses a hollow needle to take a sample of marrow (bone marrow aspiration) and a small piece of bone (bone marrow biopsy). A pathologist checks these samples for signs of cancer. Many of the same tests done on your blood can also be done on your marrow.

Imaging tests to stage CLL

Imaging tests to stage CLL may include:

CT (computed tomography) scan
MRI (magnetic resonance imaging)
PET-CT (positron emission tomography-computed tomography) scan
Ultrasound

Biopsy The removal of a sample of tissue or fluid that is examined to see whether cancer is present. This may be done with a large needle or through surgical removal of tissue or fluids. Bone marrow The soft, spongy material in the center of your bones that produces all your blood cells, such as white blood cells, red blood cells and platelets. Computed tomography A procedure that uses a computer linked to an X-ray machine to make a series of detailed pictures of areas inside the body. The pictures are used to create three-dimensional (3-D) views of tissues and organs. A procedure that uses a computer linked to an X-ray machine to make a series of detailed pictures of areas inside the body. The pictures are taken from different angles and are used to create three-dimensional (3-D) views of tissues and organs. A dye may be injected into a vein or swallowed to help the tissues and organs show up more clearly. This scan may be used to help diagnose disease, plan treatment or find out how well treatment is working. Imaging In medicine, a process that makes pictures of areas inside the body. Imaging uses methods such as X-rays (high-energy radiation), ultrasound (high-energy sound waves) and radio waves. Immunophenotyping A process that uses antibodies to identify cells based on the types of antigens (markers) on the surface of the cells. A process that uses antibodies to identify cells based on the types of antigens (markers) on the surface of the cells. This process is used in basic research and to help diagnose diseases, such as specific types of leukemia and lymphoma. Immunophenotyping may also be used to separate cells into different groups based on the markers they have on the surface. Lymphocyte A type of immune cell that is made in the bone marrow and is found in the blood and in lymph tissue. The two main types of lymphocytes are B lymphocytes and T lymphocytes. A type of immune cell that is made in the bone marrow and is found in the blood and in lymph tissue. The two main types of lymphocytes (white blood cells) are B lymphocytes and T lymphocytes. B lymphocytes make antibodies, and T lymphocytes help kill tumor cells and help control immune responses. Magnetic resonance imaging A procedure in which radio waves and a powerful magnet linked to a computer are used to create detailed pictures of areas inside the body. A procedure in which radio waves and a powerful magnet linked to a computer are used to create detailed pictures of areas inside the body. These pictures can show the difference between normal and diseased tissue. MRI makes better images of organs and soft tissue than other scanning techniques, such as computed tomography (CT) or X-ray. MRI is especially useful for imaging the brain, the spine, the soft tissue of joints and the inside of bones. Pathologist A physician who has special training in identifying diseases by studying cells and tissues under a microscope. Peripheral blood smear A procedure in which a sample of blood is viewed under a microscope to count different circulating blood cells (such as red blood cells, white blood cells or platelets) and see whether they look normal. Platelet A tiny, disc-shaped piece of a cell that is found in the blood and spleen. Platelets help form blood clots to slow or stop bleeding and to help wounds heal. A tiny, disc-shaped piece of a cell that is found in the blood and spleen. Platelets are pieces of very large cells in the bone marrow called megakaryocytes. They help form blood clots to slow or stop bleeding and to help wounds heal. Having too many or too few platelets, or having platelets that do not work as they should, can cause problems. Checking the number of platelets in the blood may help diagnose certain diseases or conditions. Polymerase chain reaction A laboratory method used to make many copies of a specific piece of DNA from a sample. It allows very small amounts of DNA to be amplified so they can be detected. A laboratory method used to make many copies of a specific piece of DNA from a sample that contains very tiny amounts of that DNA. Polymerase chain reaction allows these pieces of DNA to be amplified so they can be detected. Polymerase chain reaction may be used to look for certain changes in a gene or chromosome, which may help find and diagnose a genetic condition or a disease, such as cancer. It may also be used to look at pieces of the DNA of certain bacteria, viruses or other microorganisms to help diagnose an infection. Red blood cell A type of blood cell that carries oxygen in the body. Sign In medicine, a sign is something found during a physical exam or from a laboratory test that shows that a person may have a condition or disease. In medicine, a sign is something found during a physical exam or from a laboratory test that shows that a person may have a condition or disease. Some examples of signs are fever, swelling, skin rash, high blood pressure and high blood glucose. Stage The extent of a cancer in the body. Staging is usually based on the size of the tumor, whether lymph nodes contain cancer and whether the cancer has spread from the original site to other parts of the body. Bone marrow aspiration A procedure in which a small sample of bone marrow is removed, usually from the hip bone, breastbone or thigh bone.

A procedure in which a small sample of bone marrow is removed, usually from the hip bone, breastbone or thigh bone. A small area of skin and the surface of the bone underneath are numbed with an anesthetic. Then, a special wide needle is pushed into the bone. A sample of liquid bone marrow is removed with a syringe attached to the needle. The bone marrow is sent to a laboratory to be looked at under a microscope. This procedure may be done at the same time as a bone marrow biopsy.

Resources for patients and caregivers

Here are tips on how to get ready for your first appointment at Fred Hutch and what to bring.

Preparing for Your First Visit

Resources for New Patients

Just like every patient’s situation is different, every caregiver may be asked to help with different tasks. Learn how you can offer support during a first visit.

Caregiver A person who gives care to people who need help, such as children, older people or patients who have chronic illnesses or disabilities. A person who gives care to people who need help taking care of themselves, such as children, older people or patients who have chronic illnesses or disabilities. Caregivers may be health professionals, family members, friends, social workers or members of the clergy. They may give care at home, in a hospital or in another health care setting.

Caregiving at the first appointment

As a caregiver, you can give your loved one both emotional and practical support for their first appointment. Ask them if you can help with things like these:

Helping them manage their stress, worry or other feelings.
Planning how to get to and from the appointment, what time to leave home and where to park.
Making a list of questions they want to ask the doctor. Our Guide to Your Care [PDF] has a list of questions they may want to ask the care team. At the appointment, make sure all their questions get answered.
Taking notes during the visit. The doctor will be giving a lot of details, which can be hard to remember later without notes.

Resources for Caregivers

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