What questions should I ask my oncologist about MDS

Key Questions to Ask Your MDS Oncologist

Here are important questions organized by topic to help you understand your diagnosis, treatment options, and what to expect:

ABOUT YOUR DIAGNOSIS & RISK LEVEL

1. "What is my IPSS-R risk score, and what does that mean for my prognosis?"

   • According to NCCN Guidelines, doctors use the IPSS-R (Revised International Prognostic Scoring System) to categorize MDS into risk groups. This helps determine your treatment approach and monitoring schedule.

2. "What cytogenetic abnormalities (chromosome changes) do I have, and what do they mean?"

   • Cytogenetics are important because certain chromosome patterns affect how your disease may progress. For example, del(5q) is a specific deletion that opens up certain treatment options.

3. "What genetic mutations were found in my bone marrow, and which ones are most important?"

   • NCCN Guidelines identify frequently mutated genes in MDS (like TP53, ASXL1, SF3B1, RUNX1). Some mutations suggest better or worse prognosis, and some predict response to specific treatments.

4. "Do any of my mutations suggest I might have a hereditary condition I should know about?"

   • Certain mutations can be inherited. Your doctor should discuss whether genetic counseling or testing of family members is recommended.

ABOUT YOUR SPECIFIC SITUATION

1. "What percentage of blasts (immature blood cells) do I have, and what does that tell us?"

   • Blast percentage is crucial—it helps determine whether you have lower-risk or higher-risk MDS and guides treatment decisions.

2. "Are there any signs my MDS might transform into acute myeloid leukemia (AML)?"

   • Understanding your transformation risk helps with monitoring and treatment planning.

3. "What are my cytopenias (low blood cell counts), and which ones are causing me the most problems?"

   • Different cytopenias (low red cells, white cells, or platelets) require different management approaches.

ABOUT TREATMENT OPTIONS

1. "Based on my risk level and mutations, what treatment options do you recommend, and why?"

   • According to NCCN Guidelines, treatment varies significantly based on risk category. Lower-risk MDS may use supportive care, lenalidomide, or erythropoiesis-stimulating agents (ESAs). Higher-risk disease typically uses hypomethylating agents like azacitidine or decitabine.

2. "If I have del(5q), why is lenalidomide a preferred option for me?"

   • This is a specific scenario where NCCN Guidelines recommend lenalidomide as a first-line treatment.

3. "Do I have SF3B1 mutations or ring sideroblasts, and how does that change my treatment?"

   • SF3B1 mutations and ring sideroblasts (a specific type of abnormal red blood cell) are associated with better prognosis and may qualify you for imetelstat or luspatercept.

4. "If I have IDH1 or IDH2 mutations, should I consider ivosidenib or enasidenib?"

   • These are targeted therapies for specific mutations. NCCN Guidelines recommend considering them for certain patients.

5. "What is the goal of my treatment—to cure the disease, control it, or manage symptoms?"

   • This helps set realistic expectations and align treatment with your values.

ABOUT MONITORING & FOLLOW-UP

1. "How often should I have blood tests and bone marrow biopsies, and why?"

   • NCCN Guidelines recommend monitoring at least every 3-6 months, but frequency depends on your risk level and treatment response.

2. "What signs of disease progression should I watch for and report?"

   • Know the warning signs that warrant urgent contact with your team.

3. "How will we measure whether my treatment is working?"

   • Ask about response criteria (like the International Working Group criteria) so you understand what "response" means.

ABOUT SIDE EFFECTS & QUALITY OF LIFE

1. "What are the most common side effects of my recommended treatment, and how can we manage them?"

   • Understanding side effects helps you prepare and know when to call your doctor.

2. "Are there clinical trials I might be eligible for?"

   • NCCN Guidelines mention clinical trials as an option, especially if standard treatments aren't working.

3. "How will treatment affect my energy, work, and daily activities?"

   • This helps you plan and set realistic expectations.

ABOUT SUPPORTIVE CARE

1. "What supportive care do I need—transfusions, growth factors, or other medications?"

   • According to NCCN Guidelines, supportive care is important for managing cytopenias and symptoms.

2. "Should I be evaluated for iron overload from transfusions, and if so, how?"

   • Chronic transfusions can lead to iron buildup, which requires monitoring and sometimes treatment.

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TIPS FOR YOUR CONVERSATION

• Write down your questions beforehand so you don't forget them
• Bring a family member or friend to take notes and help you remember information
• Ask your doctor to explain things in plain language if medical terms are confusing
• Request copies of your test results and genetic reports to keep for your records
• Ask about resources—patient organizations, support groups, or educational materials about MDS

According to NCCN Guidelines for Myelodysplastic Syndromes (Version 1.2026), your care should be individualized based on your risk category, specific mutations, and cytogenetic findings. These questions will help you and your oncologist work together to create the best treatment plan for your situation.

This information is for educational purposes only. Always consult your healthcare team for personalized medical advice and decisions.