Getting organized after a pancreatic cancer diagnosis can be an important step in gaining control of your situation. Here are tips to help you get organized.
1. Learn the Basics
Understanding your specific diagnosis will help you make informed decisions. Ask your doctor:
- 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 treatments do you recommend?
2. Be Informed
Contact Patient Central for free resources and answers to your questions about:
- Pancreatic cancer
- Clinical trials
- Pain management
- Dietary concerns
- Side effects
3. Get Copies of Your Records
Always ask for a copy of your medical records and lab results, including:
- CT scan
- CA 19-9
- Biopsy results
These are important when meeting with other doctors, especially when getting a second opinion. Though some institutions may need new testing, it may save time and money to have these tests readily available. You have the rights to all of your records and lab results.
4. Choose Your Healthcare Team
Seeing pancreatic cancer specialists, physicians who diagnose and treat a high volume of pancreatic cancer patients, improves outcomes. The Pancreatic Cancer Action Network strongly recommends consulting with pancreatic cancer specialists who have experience diagnosing and treating the disease.
You should feel comfortable and supported by your healthcare team. The Pancreatic Cancer Action Network strongly recommends seeking a healthcare team that suits all of your physical, mental and emotional needs.
Comprehensive cancer centers may have the most thorough care with highly qualified doctors and specialized cancer services. However, you may find a smaller, local hospital also has the expert care you need. Contact Patient Central to learn about pancreatic cancer specialists in your area.
5. Get a Second Opinion
You have a right to get a second opinion. Pancreatic cancer is rare, and general oncologists are not familiar with treating this disease. The Pancreatic Cancer Action Network strongly recommends seeking a second opinion, as needed, at any point in your diagnosis.
6. Learn About Treatment Options
You are your own best advocate. The Pancreatic Cancer Action Network strongly recommends discussing your treatment goals with your healthcare team and knowing all of your options at every stage of your disease.
Options may include surgery, radiation therapy, chemotherapy, targeted therapy or a mix of these. They may be given as a standard protocol or as part of a clinical trial. Making decisions quickly is important, but getting care from the right doctor and center is even more critical. Do not feel rushed – get the information you need!
Contact Patient Central to learn more about available treatment options.
7. Consider a Clinical Trial
Pancreatic cancer patients who participate in clinical research have better outcomes. Every treatment available today was approved through a clinical trial. The Pancreatic Cancer Action Network strongly recommends clinical trials at diagnosis and during every treatment decision.
Clinical trials are research studies that investigate new treatments or new treatment combinations. Patient Central can answer your questions and perform a personalized clinical trials search.
8. Communicate with Your Healthcare Team
Prepare for doctor’s visits.
- Write down all of your questions, symptoms or side effects. Give this information to your healthcare team before the appointment.
- Invite a trusted friend or family member to come with you, or ask your doctor if you can record the appointment.
Ask for supportive care as needed. Good nutritional care improves outcomes and is critical for quality of life. The Pancreatic Cancer Action Network strongly recommends patients have access to pancreatic enzymes and see a registered dietitian.
Seeing healthcare professionals who focus on symptom management and supportive (palliative) care improves outcomes and is critical for quality of life. The Pancreatic Cancer Action Network also strongly recommends symptom management and supportive (palliative) care be provided early in your diagnosis as well as during and after treatment. Contact Patient Central for resources to find dietitians and supportive care professionals.
9. Find Resources
There may be many services in hospitals that are available to patients, such as counseling, navigation services and complementary medicine. An oncology social worker may be particularly helpful in connecting you with resources.
10. Appeal when Rejected
If an insurance claim is rejected, appeal it by re-submitting the claim. Every insurance company has an appeals process. Keep copies of all the paperwork you’ve sent. If your claim continues to be rejected after multiple reviews, contact the state insurance commission.
11. Get Support
Support for the pancreatic cancer patient is critical to improve quality of life and overall well-being. Having a support system of caregivers, family, friends, healthcare professionals and a Patient Central Associate is important to address and manage the needs of the patient.
It is valuable to connect with others who are also experiencing pancreatic cancer. Contact Patient Central to learn about our Survivor and Caregiver Network, as well as other support resources.
12. Get Involved
Get involved by donating, volunteering and through advocacy. You can also join the Pancreatic Cancer Action Network’s Patient Registry to accelerate pancreatic cancer research. This registry is an online database created to look for patterns that will lead to improved treatment options and outcomes for patients.
We’re Here to Help
For free, in-depth and personalized resources and information on pancreatic cancer, contact Patient Central.
Information reviewed by PanCAN’s Scientific and Medical Advisory Board, who are experts in the field from such institutions as University of Pennsylvania, Memorial Sloan-Kettering Cancer Center, Virginia Mason Medical Center and more.