The Pancreatic Cancer Action Network (PanCAN) recently interviewed one of our PanCAN Patient Services Case Managers about how pancreatic cancer patients can best prepare for appointments with their doctor. Here are some helpful tips:
Q: What should I take with me to my appointments?
A: Being as prepared as possible for your visit is important. Here are a few recommendations on what to take with you:
- A notepad and pen so you can take notes. Consider keeping your notes in a binder or journal so you can refer to them at future appointments.
- A copy of your medical records, including a list of prescriptions, known allergies, etc., especially when meeting with other doctors on your healthcare team. Also, any information pertaining to your diagnosis, including lab results (CT scan, MRI, EUS, ERCP, CA 19-9 and biopsy results), can be helpful, especially if you are getting a second opinion. The Pancreatic Cancer Action Network strongly recommends you seek a second opinion, as needed, at any point in your diagnosis.
- Consider taking a list of questions prepared in advance.
Q: What kinds of questions should I ask?
A: Anything and everything! Contact PanCAN Patient Services to receive a fact sheet with suggested questions to ask your oncologist and other members of the healthcare team. A few areas you may want to cover include:
- Diagnosis: Understanding your diagnosis will help you make informed decisions. Some basic questions to ask are – What type of pancreatic cancer do I have? Where in the pancreas is it located? What is the stage? Has it spread to other organs? What are the symptoms I may experience from the cancer?
- Diet: Consider questions such as – Do I need to change or modify my diet? Will I need to take pancreatic enzymes? Can you recommend a registered dietitian or nutritionist?
- Lifestyle changes: Will my ability to work, travel or drive be affected? What support programs are available to me and my family? Who can I speak with about any financial and/or insurance concerns? Is there an oncology social worker or patient navigator available at this hospital to help me navigate the medical system?
- Treatment (including surgery): What treatments do you recommend and why? What are the potential benefits and risks of each option? Are there any clinical trials available to me at this facility?
- Doctor’s experience treating the disease: Even if you feel comfortable with the answers the doctor gives, it might be beneficial 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 instill more confidence in the treatment plan.
Q: Should I take someone with me to my appointments?
A: It can be very helpful to bring another person along to medical appointments. A friend or family member can be supportive, provide an extra set of ears and ensure that all questions are answered. It can also be helpful to have a person with you to help relieve any emotional concerns.
Q: Is it OK to record my conversations with my doctor so I can reference them later?
A: Recording what’s said at your appointment is a good way to avoid missing important information. Just be sure to ask the doctor for permission to record the meeting before you do so.
Q: How do I get the most out of my time with my doctor?
A: In summary, it’s important to arrive prepared, but not to the extent that you are overwhelmed. Every question may not be answered at every appointment, and that’s OK – consider narrowing your list of questions to just a handful to make it more manageable.
Write down your symptoms or side effects and provide this information to your healthcare team before the appointment, if possible. Invite a trusted friend or family member to attend the visit and/or ask the provider if you can record the appointment.