Pancreatic cancer survivor raises awareness

Editor’s note: It’s Rare Cancer Day, so we thought we’d take the opportunity to talk about how rare pancreatic cancer is and why this year’s Rare Cancer Day campaign focused on precision medicine is especially important for pancreatic cancer patients.

How common is pancreatic cancer?

More than 64,000 Americans are expected to be diagnosed with pancreatic cancer in 2023. That’s 175 people who will hear the news every day.

The National Cancer Institute defines “rare cancers” as those occurring in fewer than 15 out of 100,000 people. So, affecting 13 out of 100,000 people, pancreatic cancer is considered rare.

While about 90% of pancreatic cancer cases are pancreatic adenocarcinoma, there are also types of pancreatic cancer – such as pancreatic neuroendocrine tumors (PNETs) – that are even less common.

Despite these numbers that are low relative to more common cancers, pancreatic cancer is the third leading cause of cancer-related death. This disease demands attention.

And because pancreatic cancer is often diagnosed late, when fewer standard treatment options are available, and there is no established early detection method, it’s important for the public to be aware of risk factors for and symptoms of the disease to help patients get diagnosed earlier, when possible.

The rare nature of pancreatic cancer also means that most oncologists only see one or two pancreatic cancer patients a year. It’s hard for these oncologists to be up to date on the latest diagnostic, treatment and care information for the disease. The Pancreatic Cancer Action Network (PanCAN) recommends consulting with a specialist who has experience diagnosing and treating the disease in many patients each year.

Why is precision medicine important for pancreatic cancer patients?

Even though all pancreatic cancer cases start with cancer cells in the pancreas, and though most are the same type of pancreatic cancer, every pancreatic cancer patient is different.

A patient’s biology is an important factor in determining pancreatic cancer treatment.

This year’s Rare Cancer Day theme is the importance of genomic testing – a type of biomarker testing looking at all the unique biological characteristics and genetic makeup of a patient’s tumor to inform treatment decisions.

About one in four pancreatic cancer patients have changes (mutations) in their tumor that suggest certain treatments may work particularly well for them. Recent findings show that those in this group who are able to get treatment that matches their tumor biology live an average of one year longer compared to patients who don’t.

Genetic changes patients were born with can also impact treatment decisions.

Treatment based on patient biology, called precision medicine, is an emerging field across cancer types. As we learn about treatment for specific mutations in one cancer type, we may be able to apply those findings to patients who have the same mutations in another cancer type.

This is important because, since pancreatic cancer is rare, it may take a long time to find many pancreatic cancer patients with some of these mutations. It opens up additional potential treatment options for pancreatic cancer patients.

Also, knowing the biological changes a patient has can open up additional opportunities through clinical trials.

Clinical trials are an important treatment option for pancreatic cancer patients, and they are the only way for new treatments to be approved. Many trials are underway to study patients with specific mutations.

PanCAN strongly recommends:

  • All pancreatic cancer patients get genetic testing for inherited mutations and biomarker testing of their tumor tissue
  • Clinical trials at diagnosis and during every treatment decision

PanCAN’s Patient Services can help patients learn more about these topics and how to access them.

Contact a Patient Central Associate
For more free, in-depth information about pancreatic cancer, treatment or anything else related to the disease, contact PanCAN’s Patient Services.