Some of our acute myeloid leukemia (AML) patients begin their care by coming to the South Lake Union Clinic, which is an outpatient clinic, to meet with a physician who specializes in AML. This page will tell you about what happens at these clinic appointments.
The rest of our AML patients begin their care by going directly to the inpatient hospital at UW Medical Center - Montlake to start chemotherapy. After their hospital stay, they come to the South Lake Union Clinic for the first time. The AML treatment page explains more about how this works. (See the section about phases of AML treatment.)
Your first (pre-hospital) appointment at the South Lake Union Clinic is a time for you and your hematologist-oncologist to meet. You might meet your advanced practice provider, too. You will talk about your diagnosis 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 takes one hour. Here’s what you can expect to happen.
Confirming Your Diagnosis
To confirm your AML diagnosis, an experienced Fred Hutch hematopathologist looks carefully at your pathology slides. They look at the type of cells and how the cells behave (morphology). They may use methods such as flow cytometry, molecular testing, cytogenetic testing and next-generation sequencing (testing the cancer cells for gene changes that we can target with treatment).
It is important to identify your AML subtype. This helps your physician predict how your disease might evolve and which treatments are most likely to work for you. For example, some subtypes respond to certain medicines but not others.
Our hematopathologists may run more tests on your tissue sample to confirm your diagnosis or get more details about your disease. At your first appointment, your physician will go over your test results with you.
Risk Stratification and Staging
Physicians group AML into three risk levels (“favorable,” “intermediate” and “poor or adverse”) based on gene changes in the cancer cells. This helps your physician predict the outlook and plan your treatment.
Other things help us know how well your body can handle intense chemotherapy. Many of these things, like your levels of blood cells, show up in blood tests. You may need other tests, such as imaging of your heart, like an echocardiogram or multigated acquisition (MUGA) scan. Your physician will also check how easy it is for you to do normal daily activities.
Your physician will talk with you about the risk group for your disease and other things that might affect your treatment choices.
For AML, there is no standard staging system. If signs suggest cancer has spread outside your blood and bone marrow, you will have tests, like a lumbar puncture or CT (computed tomography) scan, to check. Fred Hutch offers all the tests you may need.
Discussing Your Treatment
Based on your test results so far, your physician will explain the treatment we recommend for you and why. It mainly depends on your AML subtype, but also many other things, like how well your body can handle intense chemotherapy. For AML, treatment often includes the option to join a clinical trial testing a new therapy or approach. 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 to help you understand 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 take notes on 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
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 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.