Quality time: Focusing on quality of life during pancreatic cancer treatment

When Dr. John Marshall first started treating patients with pancreatic cancer nearly 30 years ago, the goal of treatment was to extend a patient’s life; the quality of the patient’s life – while important – was a secondary consideration. Despite some gains in survival for pancreatic cancer in the years since, the survival rate is still in the single digits. Unfortunately, only 10 percent of patients are alive five years after diagnosis.¹ While research to improve treatment options continues, quality of life has become increasingly important.

“Patients want to be tough and compliant with their treatment because they want their cancer to go away,” said Marshall, Chief of the Division of Hematology/Oncology at Medstar Georgetown University Hospital and Director, The Ruesch Center for the Cure of Gastrointestinal Cancers. “But if their treatments are preventing them from enjoying life, they may need to reconsider their options.”

The management of cancer is a continuum, and priorities can change between a focus mostly on treatment effectiveness to a greater emphasis on quality of life, according to Dr. Marshall. “Doctors haven’t always been good at documenting quality of life,” Dr. Marshall said. “We need to be better at focusing on the specific aspects that are most relevant to patients with pancreatic cancer.”

Some doctors have struggled for a few reasons. First, while survival can be objectively measured in months and years, quality of life is determined by subjective perceptions of physical, emotional, social and cognitive aspects of a patient’s life. Many doctors do not collect this sort of data because it is difficult to measure and varies from person to person. According to Dr. Marshall, each patient has a unique set of priorities and may experience symptoms associated with pancreatic cancer differently. Some patients want to live longer, no matter what it takes; others may prioritize the quality of the remaining time they have.

“Pancreatic cancer is a miserable disease that causes a tremendous number of symptoms,” said Dr. Michael Pishvaian, the Director of Gastrointestinal, Developmental Therapeutics and Clinical Research Programs for the Johns Hopkins Kimmel Cancer Center and an associate professor at the School of Medicine. Symptoms include loss of appetite, weight loss, back or belly pain, nausea, vomiting, diabetes and more.²

Many patients expect pain or discomfort when being treated for cancer and sometimes suffer in silence. But when doctors know about their patients’ issues, they can often provide solutions. Doctors should be diligent about asking the right questions and encouraging their patients to respond honestly, reporting how they feel on both good and bad days throughout their treatment, according to Pishvaian.

Experts suggest there are a few ways patients and physicians can ensure that quality of life will be a consideration during treatment. First, communication is key. “As patients go through their diagnosis and treatment for pancreatic cancer, things continually change, making the need for information that much greater,” said Julie Fleshman, JD, MBA, president and chief executive officer of the Pancreatic Cancer Action Network. 

Second, patients who feel that their doctors are treating them as “a whole person” report higher satisfaction. Doctors do not need to care for their patients alone; they can help their patients assemble a team that includes a nutritionist, a psychiatrist and others to provide comprehensive support for their patients.

“Patients need to not only communicate their needs with the people who are supporting them,” said Fleshman, “but also advocate for themselves by asking for the latest information on treatment options, clinical trials and support resources.”

References :

1. National Cancer Institute Surveillance, Epidemiology, and End Results Program (SEER). Cancer Stat Facts: Pancreatic Cancer. Available at https://seer.cancer.gov/statfacts/html/pancreas.html. Accessed October 26, 2020.
2. American Cancer Society. Signs and Symptoms of Pancreatic Cancer. Available at https://www.cancer.org/cancer/pancreatic-cancer/detection-diagnosis-staging/signs-and-symptoms.html. Accessed October 26, 2020.