Being diagnosed with pancreatic cancer can generate many questions. The information from healthcare professionals is often overwhelming. The following list of questions may help you to organize your thoughts and better understand the diagnosis and next steps you should take.
It can be very helpful to bring another person along to appointments with the gastroenterologist. A friend or family member can be supportive, provide an extra set of ears, and ensure all the questions are answered. It is often helpful to take notes as the gastroenterologist answers your questions. Alternately, tape recording the meeting is a good way to avoid missing important information. First, ask the doctor for permission to record the meeting and then listen to the conversation again at a later time.
- What is the pancreas?
- What is cancer?
- What causes pancreatic cancer?
- How common is pancreatic cancer?
- Could I have done something to prevent this diagnosis?
- What symptoms do I have that lead to a diagnosis of pancreatic cancer?
Questions about a doctor’s experience:
- Where did you receive your medical training and complete your residency?
- Have you ever diagnosed other people with pancreatic cancer?
- How many people with pancreatic cancer do you diagnose each year?
- Where have the other people you diagnosed with pancreatic cancer gone for treatment? Did they have a similar diagnosis?
- Do you work with a healthcare team? Who are they and what are their specialties?
- If I would like a second opinion, can you recommend another gastroenterologist?
Questions about diagnostic tests:
- What tests and scans are used to confirm a pancreatic cancer diagnosis?
- Would you perform any endoscopic or other invasive tests?
- How many of these tests do you do each year?
- Are there any blood tests used to diagnose pancreatic cancer?
- Why is a complete blood count taken? What do the results mean?
- Do any of these tests or scans get repeated after I undergo treatment? How often?
- Should I have myself and my family tested for hereditary pancreatic cancer?
Questions about your diagnosis:
- Where did the cancer start? Is the cancer in the head, body or tail of my pancreas?
- What is my specific diagnosis? What type of pancreatic cancer do I have?
- Has my cancer spread? Do I need more tests to check if it has spread?
- What is the stage of the cancer? What does this mean?
- Based on the stage of the cancer, am I eligible to have it surgically removed? Why/Why not?
- What are the symptoms that I may experience from the cancer?
- What should I expect with this diagnosis?
Questions about treatment:
- What treatment choices do I have?
- What kind of doctor should I see for treatment(s)?
- Can you recommend some doctors to me? Why do you recommend these specific doctors?
- What types of treatment can I expect other doctors to recommend?
- Will you be involved in any of my treatment or follow-up?
- Will you or someone else help treat pain and other symptoms and side effects (i.e. palliative care)?
Questions about diet:
- Will my diet need to be changed or modified?
- Do you have a dietitian or nutritionist that you recommend?
- Will I need to take pancreatic enzymes or vitamins? If so, how often do I need to take each one?
Questions about daily life if diagnosed with pancreatic cancer:
- Will my ability to work be affected?
- Will my ability to travel or drive be affected?
- Should I avoid any of my usual activities?
- Are there any lifestyle changes I should make?
- Will I need someone at home to help me?
Questions about family and support if diagnosed with pancreatic cancer:
- Who can I speak with about my financial and/or insurance concerns?
- What support programs are available for me and my family?
- How do other patients and families adjust when diagnosed with pancreatic cancer?
Questions to ask yourself:
- Does my doctor seem interested in my questions? Is the doctor easy to communicate with?
- Did I get enough time with the doctor to answer all of my questions?
- Do I feel that my doctor cares about my medical outcome?
- Is my doctor open to me seeking a second opinion?
Even if you feel comfortable with the answers a doctor gives, it might be advantageous to seek a second opinion. Second opinions can be extremely valuable when making decisions about treatment. They can help provide more information about treatment options as well as more confidence in the treatment plan. Ultimately, many doctors welcome hearing the opinions of their colleagues. Click here for more information on seeking a second opinion.
To receive the names of doctors who specialize in treating pancreatic cancer, contact a Pancreatic Cancer Action Network PALS Associate toll-free at 877-272-6226 or email firstname.lastname@example.org. PALS Associates are available M-F 7am-5pm Pacific Time.
Information provided by the Pancreatic Cancer Action Network, Inc. (“PanCAN”) is not a substitute for medical advice, diagnosis, treatment or other health care services. PanCAN may provide information to you about physicians, products, services, clinical trials or treatments related to pancreatic cancer, but PanCAN does not recommend nor endorse any particular health care resource. In addition, please note that any personal information you provide to PanCAN’s associates during telephone and/or email communications may be stored and used to help PanCAN achieve its mission of assisting patients with, and finding cures and treatments for, pancreatic cancer. Stored constituent information may be used to inform PanCAN programs and activities. Information also may be provided in aggregate or limited formats to third parties to guide future pancreatic cancer research and treatment efforts. PanCAN will not provide personal directly identifying information (such as your name or contact information) to such third parties without your prior written consent unless required or permitted by law to do so.