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