Patients with MDS should choose a doctor called a hematologist-oncologist, who specializes in treating MDS. A hematologist specializes in treating disorders of the blood and an oncologist is a doctor with special training in cancer. A hematologist-oncologist specializes in diagnosing and treating blood cancers.
In order to find an MDS specialist:
- Ask your primary care doctor for a recommendation
- Contact your community cancer center
- Reach out to your health insurance plan’s referral services
- Use online doctor-finder resources, such as our MDS Specialists Directory
- Utilize the American Medical Association’s (AMA) “DoctorFinder”
- Utilize the American Society of Hematology’s (ASH) “Find a Hematologist”
Here are some important questions to ask when you meet with an MDS specialist for the first time:
- How many patients have you treated or are treating who have MDS?
- What problems or symptoms should be reported to a nurse or doctor right away?
- Is there a release form available so my family or caregiver can be given medical information?
- What are my treatment options? Are there any clinical trials available for me to consider at the moment?
Most importantly, make sure you are comfortable interacting with your doctor and the rest of the staff. When you go to an appointment, it might be helpful for you to take notes or audio recordings during the appointment. If you would like to use audio recording to remember information, you must first ask the doctor and staff if the recording is allowed. Additionally, bring a caregiver, friend, or family to provide support during the visit to assist in taking notes and listening to the doctor. It is important to make sure you fully understand what the doctor is saying and oftentimes that takes two sets of ears! If you do not understand, ask the doctor to explain it again or attempt to explain what you understood, and the doctor will clarify any misconceptions.
If you need more information or are not sure about treatment options, consider getting another opinion from a different qualified doctor.
about the author
Katie joined HealthTree as the Community Director for AML in 2021. She is a registered dietitian who previously worked at the VA hospital in Dallas, Texas where she coached veterans with blood cancer on how to use nutrition to improve their treatment outcomes and minimize cancer-related side effects. Katie is passionate about health education and patient empowerment. In her spare time, she loves to experiment with new recipes in the kitchen, spend time running outdoors and travel to new places.