A pancreatic cancer diagnosis and the decisions that come after can feel overwhelming. But getting organized can help patients and their loved ones take control and better understand their options.
Here are 10 tips for getting organized after diagnosis:
- Get the basics about your diagnosis from your doctor. Some questions to ask are, “What type of pancreatic cancer do I have?” “What is the stage?” “What treatments do you recommend?”
- Contact PanCAN Patient Services for information about the disease, treatment options – including clinical trials – side effects, finances and additional support.
- Keep copies of your medical records and lab results. These are important when meeting with other doctors, especially when seeking a second opinion. You have the rights to all of your records and lab results.
- Seek a second opinion. You have a right to seek a second opinion, and the Pancreatic Cancer Action Network strongly recommends seeking a second opinion, as needed, at any point in your diagnosis.
- Select your healthcare team. Seeing pancreatic cancer specialists improves outcomes. PanCAN strongly recommends consulting with pancreatic cancer specialists who have experience diagnosing and treating the disease.
- Learn about treatment options, and consider a clinical trial. You are your own best advocate. PanCAN strongly recommends discussing your treatment goals with your healthcare team and knowing all of your options at every stage of your disease. And pancreatic cancer patients who participate in clinical research have better outcomes. Every treatment available today was approved through a clinical trial. We strongly recommend clinical trials at diagnosis and during every treatment decision. Our PanCAN Patient Services Case Managers can perform a personalized clinical trials search for you.
- Track your symptoms, side effects and questions and then talk to your healthcare team about them. Try providing this information to your doctor before the appointment.
- Find out what support resources (counseling, navigation services, complementary medicine, etc.) are available through your hospital. An oncology social worker may be particularly helpful in connecting you with resources.
- Appeal when insurance claims are rejected. Every insurance company has an appeals process. Keep copies of all the paperwork you submit.
- Get support from family, friends and others with the disease. Support is critical to improve quality of life and overall well-being. Contact PanCAN Patient Services to learn about our Survivor and Caregiver Network and to connect with others who are also experiencing pancreatic cancer.
Contact PanCAN Patient Services for more information about any of these topics or for answers to your other pancreatic cancer questions. You can also order our free educational packet for more information to help you become informed and get organized after diagnosis.