What to Expect
If you or someone you know has recently been diagnosed with myelodysplastic syndrome (MDS), it’s important to remember that all cases of MDS are not the same. The treatment that a friend or relative received may not be the best treatment for you. Your health-care team can explain the options. They can talk with you about which combination is most likely to help you.
A diagnosis of a serious illness can feel overwhelming. We have an experienced, compassionate team ready to help you adjust to what’s happening.
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 myelodysplastic syndrome at Seattle Cancer Care Alliance has a personal team that includes an oncologist, social workers, physical therapists, nutritionists, nurse case managers, and a radiation oncologist, if needed.
Before your first visit, the team will have reviewed your pathology slides (tissue samples from any biopsies) and any scans or tests you have already had. 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.
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 be followed by a physical exam.
Then you will sit down for a conference with your doctor and other members of your 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 of myelodysplastic syndrome, you will be seen at the medical oncology clinic on the fourth floor of the SCCA clinic.
Follow-up
Once your myelodysplastic syndrome is controlled, you will 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.