Myeloproliferative neoplasms

First Appointment

Your first appointment at Fred Hutchinson Cancer Center 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 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).

Hematologist A physician who specializes in diseases of the blood and blood-forming tissues.

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“I start each appointment by asking patients what they hope to get out of it. I also want to make sure I have a very good understanding of where they are in terms of their overall health. Then, at the end, we review things and I make sure all their questions are answered.”

— Anna Halpern, MD, hematologist-oncologist

What to Expect

Your first appointment usually lasts one to two hours. You will spend about one hour with your physician. The rest of your visit may involve checking in, being taken to an exam room and getting settled in there, meeting other members of your team and setting up your next appointments. Here is what you can expect to happen.

Confirming your diagnosis

To be sure of an MPN 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.

Staging your disease

For cancer, physicians usually use a system called staging to find out how early or advanced it is. There are several types of chronic MPN, depending on the cells that are affected. Each type of MPN is identified in different ways.

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 MPN is to improve the number of healthy blood cells moving around in your bloodstream and to help with any symptoms you are having. 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.

Staging MPN

For cancer, physicians usually use a system called staging to find out how early or advanced it is. For MPN, each type is identified in a different way to come up with a prognostic score. This score helps your physician predict which treatments are most likely to control your disease or put it into remission.

Remission A decrease in, or disappearance of, signs and symptoms of cancer. A decrease in, or disappearance of, signs and symptoms of cancer. In partial remission, some (but not all) signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in 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.

Scoring MPN

Many things can affect the outlook for each patient, including their type of MPN, the percentage of blasts (abnormal blood stem cells) in their blood and bone marrow, and any chromosome abnormalities they may have.

MPN can also change over time, going from early chronic phases to accelerated phases.

Scoring tests

To decide on the treatment plan for you and your specific case of MPN, your physician will probably recommend:

Blood tests — to check how many cells of each type are in your blood (complete blood count), how the cells look (peripheral blood smear) and if they have certain abnormalities (blood chemistry).
Bone marrow aspiration and biopsy — using a needle to take small samples of your marrow. A pathologist looks at the samples with a microscope to look for and count abnormal cells. This gives us a firm diagnosis.
Cytogenetic analysis — tests of your marrow to look for chromosome abnormalities that help predict how your disease will progress and which types of treatment might be most effective.
Molecular testing — used to find mutations (changes) in the DNA of cancer cells. Some mutations are linked with a better or a worse outcome. Physicians use these test results to help plan your treatment.

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. Chromosome Part of a cell that contains genetic information. Except for sperm and eggs, all human cells contain 46 chromosomes. Pathologist A physician who has special training in identifying diseases by studying cells and tissues under a microscope. Treatment plan A detailed plan with information about a patient’s disease, the goal of treatment, the treatment options for the disease and the possible side effects and expected length of treatment. A detailed plan with information about a patient’s disease, the goal of treatment, the treatment options for the disease and the possible side effects and expected length of treatment. A treatment plan may also include information about how much the treatment is likely to cost and about regular follow-up care after treatment ends.

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 physician. (Fred Hutch’s Guide to Your Care [PDF] 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.

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