MDS First Appointment
Your first appointment at Fred Hutchinson Cancer Center is a time for you and your medical 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 care 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 to two hours. You will spend about one hour with your physician. Here’s what you can expect to happen.
Confirming Your Diagnosis
To be sure of an MDS diagnosis, your physicians will do a complete physical exam and ask about your health history and any symptoms. They will also review your blood tests. At your first appointment, your physician will also have results from any other tests and will go over them with you.
Scoring Your Disease
For cancer, physicians usually use a system called staging to find out how early or advanced it is. MDS has a different type of staging system. Physicians classify the disease using the Revised International Prognostic Scoring System (IPSS-R) or the Molecular International Prognostic Scoring System (IPSS-M). This score helps your physician decide how fast your disease is likely to progress (your prognosis).
If you have had the tests you need and you already know your prognosis, we will look at the test results before your appointment. If you have not had these tests, we will talk with you about which tests you need and why, how to get them and when you can expect results.
Discussing Your Treatment
The main goal of treatment for MDS is to improve the number of healthy blood cells moving around in your bloodstream. Treatment can be very different from person to person. After we have the results of your tests, we will meet with you again to talk about your personalized treatment in more detail.
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 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.