LEARN ABOUT THE DISEASE
We have worked with the National Comprehensive Cancer Network (NCCN) to create a booklet for pancreatic cancer patients and their families. It has a glossary of terms, treatment options, info on staging and more. You can purchase the paperback version on Amazon or download the free digital version.
KNOW WHAT TO ASK YOUR DOCTOR
Prepare for your doctor’s appointments by knowing which questions to ask. Download and print our list of questions for your next visit. Consider bringing a support person to help and record the discussion for clarity. Your aim is to understand your diagnosis, treatment plan, multidisciplinary team, and make informed decisions about your health.
Watch A Nurse’s Guide to Pancreatic Cancer: From Diagnosis to Treatment presented by two oncology nurses who offer helpful resources for understanding the treatment process and planning. Watch ‘Navigating from Diagnosis to Treatment’ , a presentation by Dr. Margaret Tempero, Director of the UCSF Pancreas Center, explaining what you need to know once diagnosed with pancreatic cancer.
CONSIDER CLINICAL TRIALS AND SECOND OPINIONS
Once you have been diagnosed, you should consider participating in a clinical trial and seeking a second opinion.
Clinical Trials: We have compiled a list of resources and search tools on clinical trials. Early access to new treatments can lead to progress in research and better treatment options and outcomes for more patients.
Second Opinions: Seeking a second opinion is always recommended. New perspectives from doctors with expertise and experience ensures that all available treatment options have been offered and explained.
CREATE YOUR TEAM
As you create your healthcare team, you will want to ensure that certain specialists are included to help you throughout treatment.
Registered Dietician: It’s important to meet with a registered dietician familiar with pancreatic cancer to create a nutrition plan to keep your body as strong as possible before, during, and after treatment.
Palliative Care Doctor: Palliative care is for people diagnosed with a serious illness. It provides relief from the symptoms, pain, and stress of an illness like pancreatic cancer. The goal is to improve the quality of life for you and your family. It provides an extra layer of support with your oncologist and can be used with curative treatment.
Psycho-Social Support Specialist: Studies have found a connection between social support, spiritual assistance, and more positive cancer outcomes. Patients are encouraged to ask their doctors about available resources within the cancer center to help them achieve a calmer and more peaceful state while navigating this challenging disease.
In addition to your oncologist, you will likely meet other medical specialists on your journey.
UNDERSTAND YOUR GENETICS
Genetic Testing & Counseling: Once you receive a diagnosis of pancreatic cancer, your healthcare provider will order germline testing (inherited genes) and somatic testing (acquired mutations) of the tumor, using a sample. This will identify whether the cancer has mutations in specific genes and provide valuable information to help steer treatment decisions.
Surveillance & Screening: For those with particular risk factors, including family history and certain genetic syndromes that increase susceptibility to pancreas cancer, it may be appropriate to participate in a research screening program. Surveillance may also be clinically recommended in instances such as a new diagnosis of a pancreas cyst or lesion.
KNOW YOU ARE NOT ALONE
We have a collection of videos featuring survivors and caregivers sharing their stories and perspectives. They offer great tips on how they coped and what helped them the most through treatment and beyond. Be inspired to hope. Watch the panel discussion Perspectives from Survivors and Caregivers , the heartfelt and funny Breaking Up with Pancreatic Cancer and the inspirational Conversation and Coaching with Pancreatic Cancer Survivors
Should you or a loved one need support navigating a pancreatic cancer diagnosis, please connect with our Director of Patient Programs, Amy Reiss. We are here for you, and there is hope.