Talking to Your Doctor About Myelodysplastic Syndrome (MDS)
Michael Jubinville, MPH
You have your own health past. Talk with your doctor about your risk factors and background with MDS. By talking openly and often with your doctor, you can make the best choices for you and your family.
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 do not forget them.
- Write down the answers you get and make sure you grasp what you are hearing. Ask for help, if needed.
- Don't be afraid to ask your questions or ask where you can find more information. You have a right to know.
Specific Questions to Ask Your Doctor
- 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?
- Should I see a doctor who does bone marrow transplantation (BMT) soon so I can learn more about MDS?
About Treatment Options
- Please keep me well informed of my treatment options so I can be an active partner in making decisions.
- Do you think I should seek out a center that specializes in treating MDS?
- Where do you think that should be?
- What treatments should I look into?
- 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 treatment?
- Can you tell me about AzaC?
- Where can I be treated with AzaC?
- Should I participate in clinical trials for this condition?
About Lifestyle Changes
- Keep me and my family informed so we can make any changes needed in how I live and where.
- Let us know as early as possible when we should contact hospice care.
- Am I getting enough nutrition?
- Are there any activities you think I should stop, or start, such as an exercise program?
- I know that no one can predict the future, but you do have a timeline for how long I may live?
- What sort of symptoms can I expect?
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. Updated January 19, 2018. Accessed March 14, 2019.
Myelodysplastic syndrome (MDS). EBSCO DynaMed Plus website. Available at: http://www.dynamed.com/topics/dmp~AN~T114054/Myelodysplastic-syndrome-MDS. Updated October 15, 2018. Accessed March 14, 2019.
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. Updated September 26, 2018. Accessed March 14, 2019.
Last reviewed December 2018 by
EBSCO Medical Review Board Mohei Abouzied, MD, FACP
Last Updated: 3/14/2019