Everyone who comes to Seattle Cancer Care Alliance (SCCA) with myelodysplastic syndrome (MDS) has a personal health care team that includes a hematologist, social worker, physical therapist, nutritionist, and nurse case manager.
Having a serious illness can feel overwhelming. Your experienced, compassionate team is 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.
If you have questions about your condition, your treatment, and your future, write them down and bring them with you when you see your doctor.
Ask someone you trust to go with you to doctors’ appointments and tests. This person can provide emotional support and help you by keeping track of questions you want to ask, taking notes, and doing research on your disease and treatment options.
Before Your Visit
It’s important to be evaluated thoroughly soon after diagnosis (or even with a suspected diagnosis) of MDS to determine where you are in the spectrum of these diseases and devise an individualized long-range management plan. Our team provides state-of-the-art evaluation, including using new research tools to pinpoint your diagnosis if it is still in question.
Before your first visit, your team will have reviewed your pathology slides (tissue samples from any biopsies), if available, and any scans or tests you have already had. The team may also want to repeat one or more of the tests since these diseases are progressive and our recommendations can be most meaningful to you if they are based on the most up-to-date results.
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. This allows us to base our recommendations on the most up-to-date information about your bone marrow. Also, our doctors and nurses do these tests almost daily and are truly experts.
During Your Visit
During your first visit, you will 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 your health care team to discuss a treatment plan.
We will give you information about what medical science has to offer, and we will explain how the various options should be used in your particular situation.
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 SCCA with a diagnosis (or suspected diagnosis) of MDS, you will most likely be seen in the Medical Oncology Clinic on the fourth floor of the SCCA clinic. Our doctors also see patients on the sixth floor.
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.