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by EBSCO Medical Review Board

Talking to Your Doctor About Myelodysplastic Syndrome (MDS)

You have your own health history. Talk with your doctor about your risk factors and background with MDS. By talking openly and often with your doctor, you can take an active role in your care.

Tips for Getting Information

Here are some tips that will make it easier to talk to your doctor:
  • Bring someone with you. It helps to have another person hear what is said and think of questions to ask. They may also be able to give more details.
  • Write down your questions so do you do not forget them.
  • Write down the answers you get and make sure you understand what you are hearing.
  • Ask for help if you need it. Do not be afraid to ask questions or ask where you can find more information. You have a right to know.

Questions to Ask Your Doctor

About MDS
  • What type of MDS do I have?
  • What can I do to help myself through it?
  • What sources of information can I use—organizations, websites, other doctors?
  • What sort of symptoms can I expect?
About Treatment Options
  • Do you think I should seek out a center that specializes in treating MDS? Where?
  • What treatments should I look into?
  • Should I see a doctor who does bone marrow transplants (BMT) soon?
  • What are the side effects that I should watch for? How can we manage them?
  • What are the risks and benefits of treatment?
  • Should I be in clinical trials for this condition?
About Lifestyle Changes
  • What lifestyle changes do I need to make?
  • Am I getting enough nutrition?
  • Are there any activities I should stop, or start—such as an exercise program?
About Outlook
  • Do you have an idea of how long I may live?
  • When should I start looking for hospice care?

References

Getting the most out of your doctor appointment. American Academy of Family Physicians Family Doctor website. Available at: https://familydoctor.org/tips-for-talking-to-your-doctor. Accessed April 19, 2022.
Myelodysplastic syndrome (MDS). EBSCO DynaMed website. Available at: https://www.dynamed.com/condition/myelodysplastic-syndrome-mds. Accessed April 19, 2022.
Talking with your health care team. National Cancer Institute website. Available at: https://www.cancer.gov/about-cancer/coping/adjusting-to-cancer/talk-with-doctors. Accessed April 19, 2022.

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