Just diagnosed with MDS — what should I do first

First Steps After an MDS Diagnosis

I'm glad you're taking an active role in understanding your condition. Here's what you should focus on right now:

1. Understand Your Specific Type of MDS

MDS isn't one-size-fits-all. Your doctors need to determine:

• Your risk level — According to NCCN Guidelines, MDS is classified into risk categories (very-low, low, intermediate, and higher-risk). This dramatically affects your treatment approach.
• Your blast percentage — How many immature blood cells (blasts) are in your bone marrow. This helps determine if your MDS might progress to acute myeloid leukemia (AML).
• Your cytogenetics — The chromosomal changes in your cancer cells. For example, a deletion of chromosome 5 (del(5q)) is associated with a more favorable prognosis and opens up specific treatment options like lenalidomide.

2. Get Comprehensive Genetic Testing

According to NCCN Guidelines, molecular testing (genetic sequencing) is now standard and important because:

• Certain mutations predict how your disease will behave
• Some mutations indicate specific treatment options (for example, IDH1 or IDH2 mutations may respond to targeted drugs like ivosidenib or enasidenib)
• Mutations in genes like TP53, ASXL1, or RUNX1 are associated with poorer prognosis and may change your treatment strategy

Ask your doctor: "Has my bone marrow been tested for genetic mutations? Which genes were included in the testing?"

3. Get a Complete Blood Count (CBC) and Bone Marrow Evaluation

You should have:

• Regular blood tests showing your hemoglobin, platelet count, and white blood cell levels
• A bone marrow biopsy (if not already done) to confirm the diagnosis and assess blast percentage
• Cytogenetic testing (chromosome analysis)

4. Determine Your Prognostic Score

Your doctor should calculate your risk using the IPSS-R (Revised International Prognostic Scoring System), which NCCN Guidelines identify as the preferred risk assessment tool. This score helps predict:

• How quickly your disease might progress
• Whether you need immediate treatment or can be monitored
• What treatment options are most appropriate

5. Questions to Ask Your Hematologist/Oncologist

• What is my specific MDS subtype and risk category?
• What genetic mutations do I have, and what do they mean for my prognosis?
• Do I need treatment now, or should we monitor my blood counts?
• What are my treatment options given my specific situation?
• How often will we check my blood counts and bone marrow?
• Am I a candidate for a clinical trial?
• Should I see a specialist in MDS or consider a second opinion?

6. **Organize Your [ID removed]

• Request copies of your bone marrow biopsy report
• Get your genetic testing results
• Keep all blood work results in one place
• This helps you understand your disease and share information with other doctors if needed

7. Consider Your Overall Health

According to NCCN Guidelines, your doctors will also consider:

• Your age and overall fitness
• Other medical conditions you have
• How well you tolerate treatments
• Your personal preferences about treatment intensity

8. Don't Rush Into Treatment (Usually)

For many patients with lower-risk MDS, the first approach is "watch and wait" with regular monitoring. According to NCCN Guidelines, supportive care (managing anemia, infections, and bleeding) is often the initial strategy. Treatment decisions depend on your specific risk level and how your disease behaves over time.

What NOT to Do

• Don't assume you need immediate chemotherapy (many MDS patients don't)
• Don't make treatment decisions without understanding your specific type of MDS
• Don't skip follow-up appointments or blood work
• Don't hesitate to ask for clarification or a second opinion

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Next Steps This Week

1. Schedule a follow-up appointment with your hematologist/oncologist
2. Write down your questions before the appointment
3. Request your test results in writing
4. Ask about genetic testing if it hasn't been done
5. Consider bringing a trusted friend or family member to appointments to help you listen and take notes

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