Pancreatic Cancer Awareness: A Digital Community for Patients + Caregivers

On the precipice of a battle against a disease with a five-year survival rate of 11 percent, hope becomes an invaluable commodity. By Stage IV, patients with pancreatic cancer have a one percent chance of surviving up to five years—the lowest life expectancy of all cancer types. And pancreatic cancer is the third-leading cause of cancer-related deaths in the United States. The daunting reality of a pancreatic cancer diagnosis means patients need all the help they can get.

Let’s Win Pancreatic Cancer is a non-profit and digital platform dedicated to delivering patients with the disease and providers key information surrounding pancreatic cancer care. In recognition of November as Pancreatic Cancer Awareness Month, ACCCBuzz spoke with Cindy Gavin, founding executive director of Let’s Win Pancreatic Cancer, to discuss the platform’s efforts toward raising awareness for pancreatic cancer.

ACCCBuzz: What inspired Let’s Win Pancreatic Cancer?

Gavin: Our late co-founder Anne Glauber was a PR [public relations] professional, and, when she got diagnosed with pancreatic cancer at age sixty, she was told to get her affairs in order. Many patients are told, ‘We have nothing. We don’t have any new treatments, and we have two standard of care drugs. With one treatment, you may live eight or eleven months, but your quality of life may be terrible.’ But the truth is, there is so much research happening in pancreatic cancer, so people need to look for the best treatment option available.

Anne believed the messaging around pancreatic cancer was terrible, but this [disease] does not have to be a death sentence. There are many treatments available to extend your life, while contributing to the research available for future patients. So Anne had the vision to create Let’s Win Pancreatic Cancer, which is an online platform and communications vehicle.

We publish stories every three days on the promising science and clinical trials that are happening, [as well as] stories encouraging patients to get the clinical trials. In pancreatic cancer, clinical trials are not a last resort. We also publish stories about managing pancreatic cancer. Pain management, anxiety, [and] nutrition are important factors that contribute to a patient feeling optimal, so they can get the best treatment. All our content is medically vetted by a medical doctor, researcher, or an expert in the given space.

ACCCBuzz: Why is Pancreatic Cancer Awareness Month important?

Gavin: Pancreatic cancer is a big problem. There are only 62,000 patients diagnosed a year with pancreatic cancer, and, while there are over 250,000 patients diagnosed with breast cancer each year, the survival rate is significantly higher in breast cancer.

In pancreatic cancer, there is no standard of care screening. When you think about awareness in the cancer space (breast cancer, colon cancer, prostate cancer, lung cancer), there are screening mechanisms that help people detect the disease at an earlier stage. If there is early detection in a cancer diagnosis, there are almost always better life outcomes.

In the last fifty years, the improvement in survivorship is directly correlated with people being screened and the disease being detected early. That is an important element of cancer success and survivorship. However, the pancreas is a hidden organ, the symptoms mimic other conditions, and it is very hard to feel a tumor. For the general population, there is no screening that is available on a routine basis. So what is most important is raising awareness about symptoms and risk factors.

General oncologists treat many kinds of cancers, and, respectfully, we want to make sure that they are not missing an early diagnosis and that they can get patients the best treatment options available. We do that through education and awareness programs because it is very important in all cancer spaces, particularly in pancreatic cancer.

At Let’s Win Pancreatic Cancer, we also have educational programs, webinars, newsletters, and campaigns to ensure that people know their risks and know the symptoms to look out for.

ACCCBuzz: What steps can the public take to increase the possibility of an early diagnosis of this disease?

Gavin: One of the things that we have learned over the years that will continue to be important in the future is familial history. In the last 25 years, researchers have discovered that the BRCA mutation significantly increases your risk of getting cancer. But there are families with no identified mutation who have a history of the disease. So knowing your family history is very important.

Another risk factor is type 2 diabetes, particularly new-onset diabetes for those older than 50 years. Researchers are taking a closer look at the relationship between these two diseases.

Once you are aware of the risk factors that affect you and your loved ones, you can monitor the symptoms of the disease. With pancreatic cancer, for example, many of the symptoms are vague: back pain, abdominal pain, or loss of appetite. Often, patients do not get diagnosed until they are Stage IV. That means that it has already metastasized and spread to other organs. It is also important for patients to know their body. If something does not feel right, they need to be able to advocate for themselves.

ACCCBuzz: What does the future of Let’s Win Pancreatic Cancer look like?

Gavin: Let’s Win Pancreatic Cancer launched with 15 stories in 2016, and today we have over 600 unique science-based stories that we have published. We have published stories from 175 different medical providers from more than 80 institutions. We have also shared over 200 unique patient stories about the disease.

We just launched the re-thought platform that makes the most important information easy to find. Now the website is going to be a true editorial platform. Our website is going to be very intuitive. Patients will be able to easily navigate the site for what they are looking for.

Cindy Gavin is the founding executive director at Let’s Win. She spent the first half of her career in public accounting and could say the word “cancer” before she could walk. Her grandmother was diagnosed with four kinds of cancer, starting when her mother was four years old. And now, Gavin believes it is important to pay back the care her grandmother had, so she has spent the last 25 years advocating for patients with cancer.