Talking to Your Doctor About Myelodysplastic Syndrome (MDS)
General Tips for Gathering Information
- 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
- 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?
- 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?
- 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?
- 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?
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.
- Reviewer: Mohei Abouzied, MD, FACP
- Review Date: 12/2013 -
- Update Date: 01/13/2014 -
This content is reviewed regularly and is updated when new and relevant evidence is made available. This information is neither intended nor implied to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with questions regarding a medical condition.
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