A Q&A with Lola Rahib, PhD, Lead Scientist, Pancreas Cancer, at Cancer Commons, Los Altos, CA; lola.rahib@cancercommons.org
Q: Navigating a pancreatic cancer diagnosis can be overwhelming and confusing for patients and their loved ones. How can patients and their caregivers ensure having the knowledge, support, and plan they need to be able to navigate treatment options and other aspects of the disease?
A: Patients and caregivers can regain control of a chaotic and anxiety-inducing process by making sure they maintain and organize detailed medical records and information about diagnosis, treatments, and options. As a patient it is critical to advocate for yourself and your needs. If this is not possible, ensure a designated family member or caretaker can advocate on your behalf.
Q: What are the specific aspects of the disease that are most important to navigate?
A: Patients and their caregivers should be equipped and feel empowered to make treatment decisions by understanding their disease, having a care team they feel comfortable with, knowing their treatment options, and understanding how to manage symptoms and side effects.
Understanding the disease: At diagnosis, patients should receive their pathology report and have the opportunity to review it with their physician. The pathology report along with imaging results contains information about the cancer diagnosis and extent of the disease. Patients diagnosed with pancreatic cancer should have molecular testing performed—both somatic (specific to the tumor) and germline (inherited genetics)—which may provide potential treatment options specific to their tumor. Somatic molecular testing can be done on a surgical sample or on tissue from a biopsy. Blood or saliva is used for germline testing.
Care team: Patients should be treated by a multi-disciplinary team at a cancer center that cares for a high volume of pancreatic cancer patients. National Cancer Institute (NCI)-designated cancer centers should be explored if geographically convenient. Patients should seek second or more opinions if they are able to. Opinions vary between experts—it is important to have a care team that is aligned with the patient’s goals and with whom they feel comfortable.
Treatment options: Patients should explore and understand the available treatment options specific to their disease. This may include standard-of-care treatments, a clinical trial, or off-label treatment, which refers to medication that is approved by the U.S. Food and Drug Administration (FDA) for other diseases but can be prescribed for pancreatic cancer if deemed appropriate. Enrolling in a clinical trial allows patients to try treatments that are not available as standard of care. It is important to explore all treatment options not only at diagnosis but every time a treatment decision needs to be made. If you would like assistance, Cancer Commons can help you explore and identify personalized treatment options.
Managing symptoms and side effects: Patients should understand the symptoms of the disease, the side effects associated with treatment, and how they can be best managed. Symptoms may include abdominal or back pain, digestive problems, poor appetite, blood clots, diabetes, and depression. It is important that patients work with their care team, have a plan to manage these symptoms, and be referred to the appropriate specialist, including a dietitian, a pain specialist, psychologist, and others.
Side effects of treatment may include nausea and vomiting, diarrhea, mouth sores, fatigue, constipation, anemia, hair loss, “chemo brain,” and neuropathy. Patients should work with their oncology team to come up with the best strategies to manage side effects.
Navigating the various aspects of pancreatic cancer may feel challenging at times for patients and their caregivers. I think it is important for patients and caregivers to keep as much normalcy in their lives as possible; continue working if possible, continue their hobbies, etc. Both patients and caregivers should maintain a well-balanced diet, get proper sleep, participate in physical activity, and focus on emotional and spiritual well-being as much as they can.
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