The latest installment in our “Ask Patient Central” series addresses self-advocacy, why it’s important and how patients (and caregivers acting on their behalf) can start taking a more active role in their care.
You are not alone on your pancreatic cancer journey. Build your support team. Your healthcare team, friends and family, as well as the highly trained Patient Central staff of the Pancreatic Cancer Action Network (PanCAN), can be immensely helpful as you fight pancreatic cancer. While these resources are available to you, PanCAN encourages all patients to be their own advocates.
Self-advocacy is a person’s ability to take charge of their healthcare, to communicate their needs and to make informed decisions, while taking responsibility for those decisions. Through these actions, patients can improve their quality of life and feel comfortable with their treatment choices.
PanCAN interviewed Patient Central Associate Toni Alugbue to learn how patients can start advocating for themselves. She offered the following tips:
- Learn about pancreatic cancer. Ask your doctor questions to help you understand the disease. Some basic questions to ask include: What type of pancreatic cancer do I have? What stage is it? What are my treatment options? Has it spread? Asking these questions, and any others from this list of questions, will help you to make informed decisions about your treatment goals.
- Speak up! Talk about your treatment goals with your healthcare team, and continue ongoing discussions about these expectations throughout your care. Your doctor won’t know what’s on your mind unless you speak up, so be sure to talk about your concerns, feelings and any symptoms or side effects you are experiencing. If you find any medical information confusing, ask your doctor to repeat or rephrase the information until you understand everything that is discussed. And don’t hesitate to reach out to your doctor in between visits if other questions arise.
- Seek a second opinion. Schedule an appointment with a pancreatic cancer specialist to ensure that you receive the best quality care. Contact a Patient Central Associate to learn more about getting a second opinion and to locate pancreatic cancer specialists in your area.
- Ask for help. Call Patient Central for information about the disease, treatment options, clinical trials, symptom and pain management, support groups, diet and nutrition and more. If you are interested in seeing a social worker or enrolling in a patient navigator program, contact your hospital to see what options are available. For family and friends who want to help but don’t know how, make a list of the things you need help with to give them.
Watch Toni’s full interview below.