What should I bring to my first Ewing Sarcoma appointment

What to Bring to Your First Ewing Sarcoma Appointment

Here's a practical checklist to help you prepare for your initial consultation:

[ID removed] & Imaging

• All imaging studies (MRI, CT scans, X-rays, PET scans) - either on CD/USB or know where they're stored
• Pathology report from your biopsy, including any molecular/genetic testing results (cytogenetics, FISH, or PCR results showing your specific translocation)
• Lab results showing your lactate dehydrogenase (LDH) level and complete blood count (CBC)
• **Any previous [ID removed] from other doctors or hospitals
• Referral paperwork from your primary care doctor

Personal Health Information

• Insurance card and photo ID
• List of current medications (including supplements and over-the-counter drugs)
• Allergy information (medications, contrast dyes used in imaging)
• Family medical history - note any relatives with cancer
• Fertility information - if you're of childbearing age, bring any documentation about fertility preservation options you may have discussed

Questions & Documentation

• Written list of questions (see below for suggestions)
• Symptom timeline - when did you first notice pain, swelling, or other symptoms?
• Notebook or device to take notes during the appointment
• Contact person - bring someone to listen and help you remember information

Key Questions to Ask at Your First Appointment

According to NCCN Guidelines for Ewing Sarcoma, your care team will be evaluating several important factors. Consider asking:

1. About your diagnosis:

   • What is my specific translocation type (EWSR1::FLI1 or another type)?
   • Has all recommended biomarker testing been completed?
   • What does my LDH level tell us about my prognosis?

2. About staging and treatment planning:

   • What stage is my disease (localized or metastatic)?
   • Have I had all the recommended imaging (chest CT, full-body PET/CT or bone scan)?
   • What is the treatment plan, and why is this approach recommended for me?

3. About chemotherapy:

   • Will I receive VDC/IE chemotherapy (the standard regimen)?
   • How long will chemotherapy last?
   • What are the expected side effects, and how will they be managed?

4. About local control therapy:

   • Will I need surgery, radiation, or both?
   • What are the pros and cons of each approach for my specific tumor location?

5. About your care team:

   • Who will be coordinating my care?
   • How often will I have appointments?
   • How do I reach the team between appointments?

6. About fertility & long-term health:

   • Should I consider fertility preservation before starting treatment?
   • What long-term side effects should I be aware of?
   • What will my follow-up care look like after treatment?

Why This Matters

According to the NCCN Guidelines, Ewing sarcoma treatment requires a multidisciplinary team approach—meaning you'll work with oncologists (cancer doctors), surgeons, radiation specialists, and other experts. Having your medical information organized helps your team:

• Make accurate treatment recommendations based on your specific tumor characteristics
• Avoid repeating tests you've already had
• Develop a comprehensive treatment plan quickly
• Answer your questions more thoroughly

Pro Tips

✓ Bring a trusted support person - they can help you listen, take notes, and ask follow-up questions ✓ Write down your questions in order of importance - in case time runs short ✓ Ask for copies of any new test results or treatment plans before you leave ✓ Request contact information for your care coordinator so you know who to call with questions ✓ Take photos of any written materials they give you for your records

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