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

Tue, 01/21/2014 - 11:16am

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.2

 The 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, 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."

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