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VNA of Care New England

Talking to Your Doctor About Myelodysplastic Syndrome (MDS)

You have a unique medical history. Therefore, it is essential to talk with your doctor about your personal risk factors and/or experience with MDS. By talking openly and regularly with your doctor, you can take an active role in your care.

General Tips for Gathering Information

Here are some tips that will make it easier for you to talk to your doctor:
  • Bring someone else with you. It helps to have another person hear what is said and think of questions to ask.
  • Write out your questions ahead of time so you don't forget them.
  • Write down the answers you get, and make sure you understand what you are hearing. Ask for clarification, if necessary.
  • Don't be afraid to ask questions or ask where you can find more information about what you are discussing. You have a right to know.

Specific Questions to Ask Your Doctor

About Myelodysplastic Syndrome
  • What type of MDS do I have?
  • This certainly is a complicated group of diseases. What can I do to help myself through it?
  • What sources of information do you recommend—library books, websites, other doctors?
  • Should I see a specialist in bone marrow transplantation soon after my diagnosis is made so I can learn more about the disorder?
About Treatment Options
  • Please keep me well informed of my treatment options so that I may be an active partner in making decisions.
  • Do you recommend I seek out a center that specializes in treating this disease?
  • Where do you recommend?
  • What treatments do you recommend?
  • What are the side effects that I should watch for?
  • What can I do to minimize these side effects?
  • What are the risks and benefits of my treatment options?
  • Do you recommend any of the treatments, such as AzaC?
  • Where can I be treated with AzaC?
  • Should I participate in clinical trials for this condition?
About Lifestyle Changes
  • Please follow me along with input from my loved ones so that we may anticipate necessary changes in my lifestyle and living circumstances.
  • Let us know as early as possible when we should contact hospice care.
  • Is my nutrition adequate?
  • Are there any activities you recommend I stop, like driving, or commence, like an exercise program?
About Outlook
  • It would be helpful to have some idea of how long I have to live, though I know that no one can predict the future.
  • What sort of symptoms can I expect to experience?

References

Castro-Malaspina H, O’Reilly RJ. Aplastic anemia and the myelodysplastic syndromes. In: Kasper DL, Harrison TR. Harrison's Principles of Internal Medicine. 14th ed. New York, NY: McGraw-Hill; 1998.

Silverman LR. Myelodysplastic syndrome. American Cancer Society website. Available at: http://www.nci.nih.gov/cancer%5Finformation/ . Accessed November 30, 2002.

Revision Information

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