What To Do If You Are Newly Diagnosed with Pancreatic Cancer
You or someone you love has been diagnosed with pancreatic cancer. Now what?
First, take a breath and know that you are not alone in this overwhelming moment. Let’s Win has the most up-to-date information, research, and resources to help you make informed decisions about your care moving forward. We’ve also gathered stories from other people who have faced this difficult challenge so that you can learn from their experiences and find hope in a supportive community.
While you may still be in shock after hearing this diagnosis, we are here to help you understand what to do. This page will walk you through the steps you may want to take as a newly diagnosed patient. We also provide links to important resources that will help you navigate the initial stages of pancreatic cancer treatment.
Knowledge is power. So do your research. You want to know exactly what you are dealing with so that you can make informed decisions as you start treatment. Use every opportunity to ask questions, so you can better understand the path forward.
- Complete all necessary tests, which may include scans, scopes, and bloodwork.
- Learn the tumor location, type, and stage. Understanding these aspects of your disease will impact your treatment plan. For more information on pancreatic cancer staging, visit our Stages page.
- Obtain genetic testing through blood or saliva samples. All newly diagnosed pancreatic cancer patients should have genetic testing to determine if they have certain inherited genetic mutations, regardless of family history. This information may guide your treatment plan and can be helpful to family members. Genetic testing is now considered part of the standard care for pancreatic cancer and a genetic counselor can help you make sure it is covered as part of your treatment. Visit our genetic testing pages to learn more about how to get tested.
- Obtain molecular profiling of your tumor if possible. This test can identify whether your tumor has mutations in specific genes that may make it respond better to certain treatments. This information is important as your doctor develops your treatment plan.
- If you can, bring a friend or family member with you to your appointments. Two people listening, absorbing, taking notes, and asking questions are better than one, especially when so much information is being shared. It’s especially helpful to create a list of all questions prior to your doctor appointment. Remember that there are no dumb questions!
- It is helpful to get a second opinion from a medical center that has a pancreatic cancer program, where the oncologists will know about the latest treatments (see below for more information on treatment facilities). Many major academic medical centers have formed partnerships with regional hospitals, so an experienced specialist may not be that far away. And most insurance plans, including Medicare, cover second opinions for major illnesses.
- Because pancreatic cancer is relatively rare, try to find oncologists who are experienced in treating this cancer; they are more likely to know about the latest treatments. If you are able to have surgery to remove the tumor, find a surgeon who has performed many pancreas surgeries. Surgery for pancreatic cancer is complex, and you are much more likely to get better results with an experienced surgeon. We have downloadable lists of major teaching hospitals and cancer centers in the U.S. and Canada to help you with your search for treatment.
- Your treatment may involve a combination of therapies, including chemotherapy, radiation, and surgery, requiring an interdisciplinary team. If your cancer treatment center includes a nurse navigator, he or she can help you coordinate treatment and visits. You should also continue to see your personal primary physician and specialists for other conditions that you may have. Open communication across your care team is key.
- Clinical trials offer the latest options for the treatment of pancreatic cancer, and while some participants may receive the new drug being tested, ALL participants receive the standard treatments. Speak to your doctor about participating in a trial. You or your family can research trials independently to learn more about available trials in your region. We have partnered with EmergingMed for a tool to help you find clinical trials.
- Call your health insurer—private insurance, Medicare, or Medicaid—right away in order to understand your coverage, which physicians and facilities are in-network, and any other costs associated with your treatment, including your deductibles. Seek advice on how you will handle the financial responsibilities of treatment.
As You Begin Treatment
As you start treatment your needs will change.
- Bring a notebook to all doctor and treatment visits, to write down questions, take notes, and track test results. Using the same notebook from one appointment to the other is recommended, so you have all of the history in one place.
- Rally friends and family to ensure you have support with physical and emotional needs. Friends will want to help, so let them. Accept offers of meals, childcare, rides to and from treatment, and help with household chores and errands. This may feel uncomfortable at first, but you will likely be overwhelmed by the kindness of your community and their willingness to help. There are resources such as CaringBridge or LotsaHelpingHands that can organize help.
- Feeling like you are in this battle alone is not uncommon. And having the opportunity to engage with someone who knows the path that you are on and how you are feeling is really important. Explore support groups. There are groups on Facebook as well as ones that meet in person.
- Palliative or supportive care is an important part of treatment that sometimes get overlooked. Palliative care specialists can help you manage the physical and emotional aspects of treatment, helping with symptom relief, pain management, and mental support, among others.
Take Care of Yourself
You may need support from other sources to figure out the best ways to manage side effects, and the mental and emotional strain of treatment.
- Many cancer centers have integrative oncology programs that treat the whole person, and you should consider using these services. Integrative oncology adds complementary therapies such as acupuncture, massage, yoga, and meditation, along with traditional medicine. These techniques have been shown to improve quality of life in cancer patients by easing symptoms
Click here to download a PDF of this checklist