January 21, 2014


Survey Reveals People with Early and Late-Stage Pancreatic Cancer Do Not Discuss Clinical Trials with Their Doctors

Pancreatic Cancer Action Network and Celgene Join Together to Raise Awareness about Pancreatic Cancer Through a First-of-its-kind Survey Offering a Rare Glimpse of those Living with and Caring for Pancreatic Cancer

LOS ANGELES, C.A. and SUMMIT, N.J. (January 21, 2014) — Pancreatic cancer is one of the deadliest cancers in the United States, with a five year survival rate of just six percent.¹ Now, a new survey has found that only 19 percent of people diagnosed with pancreatic cancer ever discussed the possibility of participating in a clinical trial for pancreatic cancer with their doctor at the time diagnosis was made or before receiving their first treatment.²The Pancreatic Cancer Survey: Learning through Experiences – the first national survey of nearly 400 people with any stage pancreatic cancer and caregivers – also found only four percent of all respondents said they or their loved ones discussed possible participation in a clinical trial with their doctor when the first treatment did not work, and only another four percent of all respondents said clinical trial participation was discussed after the second or later treatments did not work.²

The survey, conducted by the Pancreatic Cancer Action Network in partnership with Celgene, revealed an average gap of 2.4 months between the appearance of symptoms and pancreatic cancer diagnosis.² This time can be crucial since pancreatic cancer is usually not diagnosed until it is already at an advanced stage³ and the median life expectancy after diagnosis with advanced or metastatic disease is only approximately three months.4

“The Pancreatic Cancer Action Network believes it is critical to help patients and their caregivers learn about treatment options, including clinical trials, as early as possible—particularly given the aggressive nature of pancreatic cancer,” said Julie Fleshman, president and chief executive officer, Pancreatic Cancer Action Network. “This survey underscores the need for more awareness of pancreatic cancer and for additional resources for research and patient support to improve patient outcomes.”

The Pancreatic Cancer Action Network has declared January “National Pancreatic Cancer Clinical Trials Awareness Month” and encourages all patients to consider clinical trials when exploring treatment options.5 In addition to resources like clinicaltrials.gov, the Pancreatic Cancer Action Network has a comprehensive and up-to-date database of pancreatic cancer-specific clinical trials taking place nationwide and offers a customized eligibility search for patients through their Patient and Liaison Services program.6

Additional survey findings showed:

  • Diagnosing pancreatic cancer is often difficult because its symptoms are common and can be attributed to many other conditions.¹ Most respondents surveyed said they often saw several doctors, such as a family physician, for their symptoms, but were most often diagnosed by a gastroenterologist.² Although diagnosing physicians were more likely to refer a patient to an oncologist for treatment, the survey reveals an opportunity for gastroenterologists and other diagnosing doctors to let patients and caregivers with pancreatic cancer know they have treatment options, including clinical trials, to better prepare them and develop a treatment plan.²
  • 92.2 percent of survey respondents said they or their loved one experienced symptoms of pancreatic cancer that caused them to see a doctor.²
  • The symptoms included fatigue, acute abdominal pain and pain radiating into the back and were experienced for two months or more before they were diagnosed with pancreatic cancer.²
  • Patients suffered both emotionally from the trauma of being diagnosed and physically from the severe fatigue, pain and nausea caused by the disease or its treatment. Patients often said they felt shocked (37.0 percent), scared/anxious (24.5 percent) and devastated/heart-broken (16.3 percent), by the news of the diagnosis.²
  • Almost half (46.4 percent) of surveyed patients reported that the symptoms of the disease had stopped them from continuing normal daily activities, such as working, attending school, caring for their family, etc.²

“We hope these findings will help raise awareness of this devastating disease and prompt earlier dialogue between patients and healthcare professionals about treatment options and the potential for enrollment in clinical trials,” said Jean-Pierre Bizzari, M.D., Executive Vice President of Hematology and Oncology for Celgene Corporation. “Celgene is proud to partner with the Pancreatic Cancer Action Network on this important survey in an effort to improve patient and caregiver access to resources and information.”

About Pancreatic Cancer
While the incidence and death rates for cancer as a whole are declining, those for pancreatic cancer are on the rise.¹ In 2014, it is estimated more than 46,000 people in the United States will be diagnosed with pancreatic cancer, and nearly 40,000 people will die of the disease.7 Currently, only about 26 percent of patients with pancreatic cancer survive for one year following diagnosis.8 For patients who are not diagnosed until after the cancer has already spread, or “metastasized,” the outlook is even bleaker— the average survival time is only three months.4 Unfortunately, this is the case for more than half of patients with this disease.8

About the Survey
The Pancreatic Cancer Survey: Learning through Experiences project examined the experiences and needs of people living with pancreatic cancer at any stage and caregivers that were currently caring for or had cared for a patient within six months of survey participation. The Pancreatic Cancer Action Network conducted the survey in collaboration with Celgene. Participants in this 25-minute self-administered online survey included 184 patients and 213 caregivers aged 18 years or older. The survey was conducted between July 30 and September 18, 2013 and was aimed at providing those with pancreatic cancer and caregivers an opportunity to share their experiences as they often suffer from significantly lower survival rates than people with breast and bladder cancer.2,8

About the Pancreatic Cancer Action Network

The Pancreatic Cancer Action Network is the national organization creating hope in a comprehensive way through research, patient support, community outreach and advocacy for a cure. The organization is leading the way to increase the survival rate for people diagnosed with this devastating disease through a bold initiative — The Vision of Progress: Double the Pancreatic Cancer Survival Rate by 2020. Together, we can know, fight and end pancreatic cancer by intensifying our efforts to heighten awareness, raise funds for comprehensive private research, and advocate for dedicated federal research to advance early diagnostics, better treatments and increase chances of survival.

About Celgene
Celgene Corporation, headquartered in Summit, New Jersey, is an integrated global pharmaceutical company engaged primarily in the discovery, development and commercialization of innovative therapies for the treatment of cancer and inflammatory diseases through gene and protein regulation.
For more information please visit www.celgene.com.

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Pancreatic Cancer Action Network
Jennifer Rosen
Senior Manager, Public Relations
Pancreatic Cancer Action Network
Direct: 310-706-3362
Email: jrosen@pancan.org

Celgene Corporation
Julissa Viana
Director, Public Relations
Direct: 908-673-9405



  1. National Cancer Institute. General Information About Pancreatic Cancer. http://www.cancer.gov/cancertopics/pdq/treatment/pancreatic/healthprofessional. Accessed December 26, 2013.
  2. Celgene data on file, 2013.
  3. American Cancer Society. Cancer Facts & Figures, 2012. http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-031941.pdf. Accessed August 2, 2013.
  4. Worni M, Guller U, White RR, Castleberry AW, Pietrobon R, Cerny T, Gloor B, Koeberle D. Modest Improvement in Overall Survival for Patients With Metastatic Pancreatic Cancer: A Trend Analysis Using the Surveillance, Epidemiology, and End Results Registry From 1988 to 2008. Pancreas. 2013.
  5. Pancreatic Cancer Action Network. Facing Pancreatic Cancer: Learn About Pancreatic Cancer. “Provide Support To Patients Considering Clinical Trials.” /facing-pancreatic-cancer/treatment/treatment-types/clinical-trials//. Accessed December 26, 2013.
  6. Pancreatic Cancer Action Network. Facing Pancreatic Cancer: One-on-One Support. “Information. Resources. Hope.” /facing-pancreatic-cancer/patient-services/. Accessed December 26, 2013.
  7. Siegel R, Ma J, Zhaoui Z, Jemal A. Cancer Statistics, 2014. CA: A Cancer Journal for Clinicians. http://onlinelibrary.wiley.com/doi/10.3322/caac.21208/full. Accessed January 14, 2014.
  8. American Cancer Society. Cancer Facts & Figures, 2013. http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-036845.pdf. Accessed January 14, 2014.