What should I bring to my first oncology appointment for Pancreatic Cancer

What to Bring to Your First Pancreatic Cancer Oncology Appointment

Your first oncology appointment is crucial for getting the right treatment plan. Here's what you should prepare and bring:

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Essential documents:

• Pathology report - This is critical. It contains details about your cancer diagnosis and any genetic testing already done
• Imaging studies - CT scans, MRI, endoscopic ultrasound (EUS), or other imaging reports and images (on CD if possible)
• Lab results - Blood work, including CA 19-9 levels (a tumor marker commonly tracked in pancreatic cancer)
• Biopsy reports - If you've had a tissue sample taken
• Any prior treatment records - If you've had surgery, chemotherapy, or other treatments elsewhere

Pro tip: According to the "Navigating Pancreatic Cancer" webinar with Dr. [removed] Strickler, you should specifically ask: "Have you done the molecular profiling on my cancer? Can I see the report?" Get this printed out and bring it with you, as molecular profiling results often exist outside the main medical chart.

GENETIC & FAMILY HISTORY INFORMATION

• Family cancer history - Write down which family members had cancer, what type, and at what age. According to Dr. [removed] O'Reilly's 2024 webinar on "Novel Therapies and New Directions in Pancreas Cancer," around 12% of people have a hereditary predisposition to pancreatic cancer that can be identified through genetic testing
• Your personal medical history - Other health conditions, medications, allergies
• Genetic testing results (if already done) - BRCA1/BRCA2, Lynch syndrome, or other hereditary cancer genes

PRACTICAL ITEMS

• Insurance card & ID
• List of current medications - Include doses and how often you take them
• Notebook or recording device - To take notes or record the conversation (ask permission first). Having a family member or loved one present to help take notes is valuable
• List of questions - See section below

IMPORTANT QUESTIONS TO ASK AT YOUR FIRST APPOINTMENT

Based on pancreatic cancer guidelines, here are key questions to bring:

About Testing & Your Specific Cancer:

1. "What stage is my cancer, and what does that mean for treatment options?"
2. "Have you done genetic testing on my tumor cells AND hereditary testing on my normal cells? When will I get those results?"
3. "What is my CA 19-9 level, and what does it mean?"
4. "Are there any clinical trials I might be eligible for?"

About Treatment Planning: 5. "What is the goal of treatment?" (Is it to shrink the tumor for surgery? To extend survival? Something else?) 6. "Why are you recommending this particular treatment approach for MY cancer?" 7. "Should I see a genetic counselor?" (Current guidelines recommend genetic counseling for all pancreatic cancer patients)

About Your Care Team: 8. "Do you recommend a second opinion from another pancreatic cancer specialist?" 9. "Should I be treated at a high-volume pancreatic cancer center?" (Research shows better outcomes at centers that treat many pancreatic cancer cases)

WHY THIS MATTERS

According to Let's Win Pancreatic Cancer resources, each pancreatic cancer case is unique. Some patients may qualify for surgery without chemotherapy, while others need chemotherapy first to shrink tumors before surgery. Your oncologist will determine the best approach based on:

• Your tumor's stage and location
• Genetic mutations in your cancer
• Your overall health
• Your personal preferences

The more complete information you bring, the better your doctor can tailor a treatment plan specifically for you.

ADDITIONAL RESOURCES TO BRING

• Contact information for your primary care doctor
• Names and contact info for any other specialists you see
• A list of questions from trusted sources like:
  • American Cancer Society
  • Pancreatic Cancer Action Network (PanCAN)
  • Let's Win Pancreatic Cancer (letswinpc.org)

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