CLL 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). 

Ready to schedule 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 physician 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.

doctor reviewing record

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 physician 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
doctor writing prescription

Discussing Your Treatment

Based on your test results so far, your physician 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.

doctor reviewing notes with patient

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.

Resources for Patients and Caregivers

Here are tips about how to prepare for your first appointment at Fred Hutch and what to bring.

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 physician. Fred Hutch’s Guide to Your Care has a list of questions they may want to ask the care team. At the appointment, make sure that all their questions get answered.
  • Taking notes during the visit. The physician will be giving a lot of details, which can be hard to remember later without notes.