Patients with pancreatic cancer who report lower back or abdominal pain before their diagnosis go on to experience worse outcomes than those who report no pain, according to a new paper from a team at PanCAN. As a symptom that is generally undertreated, the authors call on healthcare professionals to introduce “early, dedicated, ongoing pain management” for patients to improve their prognosis and quality of life.

The paper, published in June 2023 in the journal The Oncologist, draws from PanCAN’s Patient Registry, a global online database created to look for patterns in treatments, side effect management and diagnostics that may lead to improved treatment options and outcomes for patients.

“PanCAN’s Patient Registry was critical to capturing responses that reflect the patients’ ‘real life’ pain experience, treatment options and the impact of that pain on overall health and quality of daily functioning,” said Terry McNearney, MD, study co-author and a PanCAN consultant. “The PanCAN Patient Registry is very important to gather patient data as much less than 10% of pancreatic cancer patients currently enroll in clinical or research studies. We want to know how the patients are faring out there, so PanCAN and the healthcare system can address unmet needs.”

For this paper, researchers looked at health assessment and pain management surveys completed by nearly 2,000 patients between 2016 and 2020. The team focused on questions about the severity of the pain experienced both pre- and post-diagnosis and how it impacted respondents’ day-to-day life.

Patients are encouraged to participate in PanCAN’s Patient Registry to help us better understand the experiences of patients and contribute to research that is focused on improving patient outcomes. Create your account.

Results were consistent: Patients who reported pre-diagnosis pancreatic cancer pain were more likely to experience physical and social impairments during the post-diagnosis time span, including the ability to do household chores and yardwork, as well as go up and down stairs and walk for 15 minutes.

These patients, as compared to those who reported no pain pre-diagnosis, also reported higher levels of depression, anxiety and fatigue, measures that impact quality of life and overall survival. Also of concern, patients experiencing undermanaged pancreatic cancer pain are at risk for decreased food intake and increased weight loss, muscle loss and susceptibility to infections, which may limit possible treatment options and further decrease quality of life.

As a result, the authors recommend the incorporation of pain medicine and palliative care specialists into a patient’s healthcare team soon after a pancreatic cancer diagnosis, as opposed to waiting until later in the course of treatment, as is often the case now.

Making this change will require shifting how these specialties are understood and utilized, said Dr. McNearney. Palliative care – also called supportive care – is often mistakenly thought of as only an option for end of life. That’s not the case: Supportive care is focused on comfort, quality of life and the patient’s total well-being at all stages of the cancer journey.

“Pancreatic cancer pain needs to be addressed at the time of diagnosis and throughout the disease course – and by a healthcare professional who has expertise, experience and resources to manage it quickly and efficiently,” said Dr. McNearney. “Patients need a fast improvement to pain, especially moderate or more severe pain levels. More attention and response to pain and its reduction will decrease unnecessary use of medical resources, like ER visits and hospitalizations for pain management.”

Managing pain is a critical component of supportive care, as previous research also based on data from PanCAN’s Patient Registry highlights just how prevalent this symptom is for patients. A 2021 study showed that roughly 93% of pancreatic cancer patients experience some amount of pain related to their diagnosis.

This same study also highlighted ways to address both chronic and acute pancreatic cancer pain, including pharmaceuticals such as opioids but also radiation therapy, procedures to numb or block the nerves or adding supplemental pancreatic enzymes for treatment depending on the reason for the pain.  Some of these treatments are used for other conditions to reduce pain. More studies may be needed to expand and improve their use in pancreatic cancer pain.

The paper also mentions complementary options, such as medical marijuana-based medicines and acupuncture, although data addressing their efficacy in reducing pancreatic cancer pain in patients is lacking.

Thanks to the participation of patients with pancreatic cancer and their caregivers, the registry offers many more opportunities to address symptoms, side effects and the patient experience. This most recent study as well as the previous research has helped to educate healthcare professionals and improve quality of life for patients – and it’s just the beginning of what is possible based on data from PanCAN’s Patient Registry.

“We are very grateful to the patients and their caregivers who participate in the Patient Registry,” said Dr. McNearney. “It is important that we understand your personal journey so patient outcomes and health management can be optimized.”

Contact a PanCAN Patient Services Case Manager
To learn more about supportive care options, or for any pancreatic cancer-related information, contact PanCAN Patient Services.