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First-of-its-kind survey offers rare glimpse of those living with and caring for pancreatic cancer

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Posted: Monday, February 24, 2014 10:00 pm | Updated: 1:40 am, Fri May 16, 2014.

(BPT) - “You have pancreatic cancer” might be one of the most frightening statements a person can hear from their doctor. Unlike other forms of cancer, pancreatic cancer is rarely caught before it is in an advanced stage and has spread, and the median life expectancy after diagnosis with advanced or metastatic disease is only approximately three to six months.

Recently, the Pancreatic Cancer Action Network in collaboration with Celgene issued results from “The Pancreatic Cancer Survey: Learning through Experiences,” the first national survey of nearly 400 people with any stage pancreatic cancer and caregivers. The survey uncovered the complexity of diagnosis and the significant impact management of the disease has on patients’ and caregivers’ lives.

Julie Fleshman, president and CEO of the Pancreatic Cancer Action Network, provides insight into the results from this survey and an overview of the resources available for these patients and their caregivers.

Q: Why is pancreatic cancer considered one of the deadliest cancers in the United States (U.S.)?

A: Pancreatic cancer is the fourth leading cause of cancer-related death in the U.S. In 2014, it is estimated that more than 46,000 people in the U.S. will be diagnosed with pancreatic cancer, and nearly 40,000 people will die from the disease. Unlike other forms of cancer, pancreatic cancer is rarely caught early, often found when it is already in an advanced stage and has spread to other parts of the body. In fact, only about 26 percent of patients with pancreatic cancer survive for one year following diagnosis and the five-year survival rate is six percent.

Q: What were some of the key findings of “The Pancreatic Cancer Survey: Learning through Experiences?”

A: Diagnosing pancreatic cancer is often difficult because symptoms are common and could be attributed to many other conditions. In fact, the survey revealed an average gap of 2.4 months between the appearance of symptoms and pancreatic cancer diagnosis.

Not surprisingly, the survey results also showed that patients reported that they suffered emotionally from the trauma of diagnosis, feeling shocked (37.0 percent), scared/anxious (24.5 percent) and devastated/heart-broken (16.3 percent), by the news of the diagnosis. In essence, the survey confirms that the time immediately following diagnosis can be emotional and confusing, making it even more challenging to make critical treatment decisions. However, it is important that patients and their caregivers take charge of the situation by talking to the treating physician about the various treatment options available to them.

Q: What did this survey reveal in terms of patient awareness of clinical trials?

A: There are a number of clinical trials occurring nationwide that are investigating new therapeutic approaches to treat pancreatic cancer, however, patients aren’t always made aware of them. These recent survey results 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. Additionally, 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.

In an effort to educate the public and patients about clinical trials, the Pancreatic Cancer Action Network declared January “National Pancreatic Cancer Clinical Trials Awareness Month” and encourages all patients to consider clinical trials when exploring treatment options with their doctor.

Q: Where can individuals find out more information about these clinical trials and other resources?

A: 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 (PALS). The PALS program also provides information and resources for pancreatic cancer patients and caregivers, ranging from nutrition to pain management. Since 2002, this free-of-charge program has served more than 75,000 pancreatic cancer patients and families.

Like the Pancreatic Cancer Action Network, Celgene supports efforts to increase understanding and resources in order to help people diagnosed with pancreatic cancer, as well as their caregivers. Learn more about pancreatic cancer from the Pancreatic Cancer Action Network at www.pancan.org or from Celgene at www.Celgene.com. Additionally, Celgene created a resource for physicians interested in learning more about pancreatic cancer at http://pancreaticcancerdiseaseeducation.com.

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