Questions to Ask Your Doctor About Myelodysplastic Syndromes (MDS)

When you’re told you have MDS

• How sure are you about the diagnosis of MDS?
• Can you explain what MDS is? How is it different from leukemia?
• Do I need any other tests before we can decide on treatment?
• Do I need to see any other types of doctors?
• What type of myelodysplastic syndrome do I have?
• Which risk group does my MDS fall into? How might this affect my prognosis and treatment options?
• Are there other factors that could affect my outlook or treatment options?
• If I’m concerned about the costs and insurance coverage for my diagnosis and treatment, who can help me?

When deciding on a treatment plan

• How much experience do you have treating MDS?
• What treatment choices do I have? Do we need to treat the MDS right away?
• Which treatment, if any, do you recommend, and why?
• What is the goal of each treatment? Is it to eliminate the MDS, manage my symptoms, or both?
• Should I get a second opinion before starting treatment? Can you suggest a doctor or cancer center?
• What should I do to be ready for treatment?
• How long will treatment last? What will it be like? Where will it be done?
• What are the risks or side effects of the treatments that you recommend? How long are they likely to last?
• Will treatment affect my daily activities?
• What is the outlook for my survival?

During and after treatment

Once treatment begins, you’ll need to know what to expect and what to look for. Not all of these questions may apply to you, but getting answers to the ones that do may be helpful.

• How will we know if the treatment is working?
• What type of follow-up will I need during and after treatment?
• Is there anything I can do to help manage side effects?
• What symptoms or side effects should I tell you about right away?
• How can I reach you on nights, holidays, or weekends?
• Do I need to change what I eat during treatment?
• Are there any limits on what I can do? 
• Should I exercise? What should I do, and how often?
• Can you suggest a mental health professional I can see if I start to feel overwhelmed, depressed, or distressed?
• What would my options be if the treatment isn’t working?
• Where can I find more information and support?

Along with these sample questions, be sure to write down any others you want to ask. For instance, you might want information about recovery times so that you can plan your work or activity schedule. Or you might want to ask about clinical trials that might be right for you.

Keep in mind that doctors aren’t the only ones who can give you information. Other health care professionals, such as nurses and social workers, can answer some of your questions. To learn more about speaking with your health care team, see The Doctor-Patient Relationship.