What to Expect

Thorough Evaluation

Several drugs that may benefit MDS or MPN patients have become commercially available. However, it’s still not clear exactly how and when the drugs should be used to achieve the best effect across the broad spectrum of MDS/MPN. This is why research is so important. It’s also the reason patients need to be evaluated thoroughly soon after diagnosis (or even with a suspected diagnosis) to determine where they are in the spectrum and devise an individualized long-range management plan.

Our team provides state-of-the-art evaluation, including new research tools to pinpoint your diagnosis if it is still in question, and we give you information about what medical science has to offer and how the various options should be used in your particular situation.

If you or someone you know has recently been diagnosed with myelodysplastic syndrome (MDS) or myeloproliferative disorder (also called myeloproliferative neoplasm, or MPN), here are a few points to consider:

• First, all cases of MDS and MPN are not the same. The treatment that a friend or relative received may not be the best treatment for you. You may want to read about common Treatment Options to learn more. Your health-care team can explain the available options. They can talk with you about which combination is most likely to help you.
• Don't rush into a decision about treatment. In most cases, you have time to consider your options and get a second opinion to help you decide what kind of treatment is right for you. Patients generally obtain the greatest benefit in regard to treatment possibilities if our physicians or researchers have a chance to meet with them and discuss options before any treatment is given.
• A diagnosis of a serious illness can feel overwhelming. We have an experienced, compassionate team ready to help you adjust to what’s happening. You may want to read the section on Patient Support. You may want to join a support group, or talk to a social worker or chaplain.
• You may have many questions about your condition, treatment, and what the future holds. Start writing down your questions. Each time you see your doctor, bring your current list of questions with you.
• Ask someone you trust to go with you to doctors' appointments and tests. This person can provide emotional support. A friend or family member can also help by keeping track of questions you want to ask, taking notes, and doing research on your disease and treatment options.

Your First Visit

Every patient with MDS or MPN at Seattle Cancer Care Alliance has a personal team that includes an oncologist, social workers, physical therapists, nutritionists, and nurse case manager.

Before your first visit, the team may have reviewed your pathology slides (tissue samples from any biopsies), if available, and any scans or tests you have already had. However, the team may also want to repeat one or another of the tests since all these diseases are progressive, and recommendations are most meaningful when they are based on the most up-to-date findings.

If you do not live in or near Seattle, we may ask your referring doctor to arrange for additional tests or scans so that these results are available before your appointment at SCCA. However, bone marrow tests are best done at our center, for several reasons. Firstly, this allows us to base our recommendations on the most up-to-date information about your bone marrow. Secondly, our physicians and nurses do these tests almost daily and, therefore, are truly experts. Thirdly, if the marrow is obtained here, our doctors and researchers can use some of the material to apply the latest research findings or even develop new approaches, from which you and patients after you may benefit.

On your first visit to SCCA, you will first meet with your doctor, who will ask you questions about your medical history and your current problem. This will usually be followed by a physical exam. Then you will sit down for a conference with your doctor and other members of the team to discuss a treatment plan.

This visit usually lasts one to two hours. We recommend that you bring a friend or family member with you to your appointment for emotional support and to help you keep track of the information your team will be giving you.
 

Where You Will Be Seen
 

If you have been referred to Seattle Cancer Care Alliance with a diagnosis (or suspected diagnosis) of MDS or MPN, you will generally be seen at the medical oncology clinic on the fourth floor of the SCCA clinic. Our doctors also see patients on the sixth floor of the clinic.

Follow-up

You may need to visit your doctor on a regular basis to check your health. During these visits your doctor will give you a physical exam and may give you tests to detect signs of disease. These may include blood tests, imaging procedures and assessments of your bone marrow. Follow-up visits are also a good time to talk with your doctor about how to manage any side effects you may have from your treatment. Your doctor will explain how often you need to visit.