When someone is first diagnosed with myelodysplastic syndrome (MDS), the condition may not cause symptoms and may not require treatment right away. In other cases, the type of MDS or genetic changes found in abnormal blood cells may indicate a higher risk and the need to start treatment sooner.

Whether your doctor has recommended starting treatment for MDS or you are simply trying to learn more about treatment options, this discussion guide can help you start a conversation with your health care provider.

Understanding Risk and Outlook

Treatment options for MDS depend on details about your condition. Understanding your risk factors and outlook will help you better understand your doctor’s reasoning when they recommend treatments. Ask your doctor these questions to learn more about your condition:

• Have my cancer cells been tested for genetic changes?
• If I do have genetic changes to my cancer cells, what do they indicate about my risk?
• What do blood test results indicate about my risk?
• Which scoring system did you use to determine my risk?
• Which risk group am I considered to be?
  • Very low
  • Low
  • Intermediate
  • High
  • Very high
• What do these test results tell you about how my cancer is likely to progress?

Deciding Whether To Start Treatment

The decision to start treatment is a collaboration between you and your doctor. You can ask:

• What are my treatment options at this time?
• Do my test results indicate that some treatments will be more effective than others?
• Do you recommend I start treatment now or wait?
• What are the benefits and risks of waiting to start treatment?
• What are the benefits and risks of beginning treatment sooner?

Assessing Current Treatment

If you are currently being treated for MDS, your doctor can help you evaluate how well your treatment plan is working.

• Do you consider my current therapy effective in treating MDS or managing symptoms?
• Am I a good candidate for any newer treatments that may be as effective (or more effective) and have fewer side effects?
• What are the possible benefits and risks of switching or adding treatments to better manage my MDS?

Be sure to tell your doctor about any side effects you have from your current treatment, or problems you have with taking your medication.

Sharing Your Goals and Priorities

Communicate with your doctor about what is most important to you. Which of these matter most, and which are lower priority?

• Living as long as possible
• Having a high quality of life
• Receiving the safest treatment, with low risk for severe side effects
• Having the most effective treatment
• Keeping out-of-pocket costs affordable
• Making fewer trips to the hospital or cancer center
• Preserving fertility

Making Treatment Decisions

Ask detailed questions about each treatment option and learn everything you need to know before deciding on the best plan for you.

• Which treatment options do you recommend, and why?
• What are the pros and cons of the treatment options you recommend?
• Which side effects are most common?
• Are there any possible severe side effects? How common are they?
• Are these treatments likely to be safe for me?
• Are these treatments likely to be effective for me?
• How would these treatments change my life on a daily, weekly, or monthly basis?
• If you recommend traditional chemotherapy, can you explain why you feel it is a better option for me than newer therapies?
• Would a clinical trial be a good option for me? Do you know of one I may be qualified to join?

Recent advances in MDS research are expanding the array of treatment options. Read more about treatment advances for MDS.

Symptoms of MDS can easily be mistaken for those of other conditions. Learn how to recognize MDS symptoms and when to tell your doctor.

Talk With Others Who Understand

MyLeukemiaTeam is the social network for people living with leukemia. On MyLeukemiaTeam, more than 11,000 members come together to ask questions, give advice, and share their stories with others who understand life with leukemia.

Are you living with myelodysplastic syndrome? What other questions would you like to ask your doctor? Share your experience in the comments below, or start a conversation on your Activities page.