On February 23, 2023, PanCAN hosted a webinar titled “A Conversation About Pancreatic Cancer in the Black Community.” Hundreds of patients and caregivers tuned in to hear our expert panel address a range of topics. We fielded questions from the audience, but we weren’t able to get to all of the ones that came in! Here, we follow up on additional questions from webinar attendees and dive deeper into some topics of interest.
We know that Black Americans are more likely to be diagnosed with pancreatic cancer than other racial and ethnic groups. Are there any known health or environmental factors that contribute to this statistic?
Pancreatic cancer disproportionately affects Black Americans. This population has the highest incidence rate of pancreatic cancer of all ethnic/racial groups in the United States, according to the National Cancer Institute SEER data. Researchers don’t know exactly why, but they believe environmental and lifestyle factors play a role. Also, some Black patients face barriers that can hinder them from receiving care, potentially leading to a later diagnosis when there are fewer treatment options. Read more about pancreatic cancer’s impact on Black Americans.
As we pursue better methods of screening and early detection, in what ways are we considering Black and minority community involvement?
PanCAN funds research that aims to understand more about pancreatic cancer risk across different racial and ethnic groups – and some of this research asks members of these communities to get involved. One example is the REGENERATE study led by Nicolette Juliana Rodriguez, MD, MPH, a gastroenterologist at Brigham and Women’s Hospital. In 2022, she garnered a PanCAN Catalyst Award for REGENERATE, which aims to assess perceptions of genetic education and testing among Black and Latino/a/x groups, with a goal to advance equitable access to genetics care. She has spent the last year leading focus groups among Black and Latino/a/x individuals to discuss a range of topics, including internet literacy, medical mistrust as well as facilitators and barriers to accessing important services like genetic testing and early cancer screening. Read more about REGENERATE.
Have you seen improvements in survival of pancreatic cancer overall and specifically in the Black community?
We have seen improvements in overall survival. This year, we celebrated the five-year survival rate for pancreatic cancer increasing to 12%, a one percentage point increase from last year. The five-year survival rate is currently 11% for Black Americans and has seen increases over the past several years. However, a disparity between white Americans and Black Americans persists when it comes to survival. The age-adjusted mortality rate from pancreatic cancer for Black Americans is higher than it is for the white population, according to the American Cancer Society. Research has shown that Black Americans are more likely to be diagnosed at a later stage, which limits treatment options and likely contributes to this disparity. Also, even when they are diagnosed early, Black Americans are less likely to undergo surgery.
My parent had pancreatic cancer. What should I do?
If you are a first-degree relative of someone diagnosed with pancreatic cancer, you may have an increased risk of developing pancreatic cancer. Your family member with pancreatic cancer is strongly recommended to undergo genetic testing for inherited mutations. Negative results often mean you do not need to get genetic testing. If the results are positive, unknown or if you have several close family members with cancer, PanCAN recommends you consult with a genetic counselor to determine if you should get genetic testing for inherited cancer risk and if you should discuss options for monitoring. It’s important to remember that being at higher risk or having a family history of pancreatic cancer does not mean that you will definitely get the disease. Fill out our Family History Worksheet to better understand your risk. And read more about genetic and hereditary factors for pancreatic cancer.
What additional surveillance tools or tests are available to families with a history of pancreatic cancer?
About 10% of pancreatic cancers are hereditary. This means that for every 10 people with pancreatic cancer, one likely has an inherited mutation that increased their risk for developing the disease. The first step is to consult with a genetic counselor to determine your risk. If a genetic counselor believes you are at a higher risk for developing the disease, experts recommend enrolling in a surveillance program if you qualify. Some doctors recommend yearly imaging scans. These scans often start at age 50 but may start sooner if pancreatic cancer has happened in that person’s family earlier in life. You can also take part in genetic or family registries. Read more about what you can do if you have hereditary pancreatic cancer in your family.
Can you highlight the symptoms of pancreatic cancer and those symptoms we tend to take for granted?
It’s important to continue to raise awareness of the symptoms of pancreatic cancer. A survey commissioned by PanCAN in November 2022 found that most adults (83%) are unaware of the signs or symptoms of pancreatic cancer. The survey also found that older adults are least likely to believe they possess this knowledge—troubling news given the fact that 90% of patients diagnosed with the disease are ages 55 and older. Here are some key symptoms: abdominal and/or lower back pain; weight loss; nausea and loss of appetite; changes in stool; jaundice; and recent diabetes. Read more about pancreatic cancer symptoms.
Why is there no annual screening to identify pancreatic cancer in early stages?
The location of the pancreas deep in the abdomen is a challenge as doctors usually cannot see or feel the tumor during a physical exam. Also, pancreatic cancer symptoms are not always obvious and usually develop over time and tests used to diagnose pancreatic cancer do not always detect small lesions, pre-cancers or early-stage cancers well. Although no universal screening tests for pancreatic cancer in the general population exist yet, researchers across the country are studying people who have a high chance of getting pancreatic cancer. Methods to detect cancer in people at increased risk are especially important. Experts do not know yet when, how or how often high-risk people should be tested. They recommend taking part in studies looking at groups at high risk for pancreatic cancer. Read more about early detection.
What do I need to ask my physician to reduce my risk and prevent or detect pancreatic cancer early?
It’s important to be able to talk to your doctor about your risk for developing pancreatic cancer, with a discussion about family history at the top of the list. If you have a first-degree relative diagnosed with pancreatic cancer, talk to your doctor about your risk and options including genetic counseling. It’s also important for individuals who are diagnosed with new-onset diabetes, after the age of 50, to discuss the potential for pancreatic cancer screening with their doctors, as their diabetes may be a symptom of pancreatic cancer. There are also modifiable risk factors that may contribute to an individual’s likelihood of developing pancreatic cancer, such as smoking, obesity and an unhealthy diet. Read more about pancreatic cancer risk factors.