Ask an Expert Series on Facebook

October 2012

From Laura: Pancreatic Cancer genetic? My mother died from it and her cousin. My mother was diagnosed and two months later died. Her cousin diagnosed and three weeks later gone! Terrible disease.

From The Lustgarten Foundation:
Dear Laura,

It is indeed a terrible disease and, yes, pancreatic cancer, like all cancers is a genetic disease meaning that it is caused by a series of changes or mutations in the DNA. Most of the time, these mutations happen by chance in a cell of the pancreas but in 5-10% of cases, the genetic alterations are passed from generation to generation which leads to families with a higher than average incidence of pancreas cancer. For more information about familial pancreatic cancer please read our Interview with an Expert.

From Roberta: I am a Pancreatic cancer survivor. My question is should I get my kids tested (they are both 16)? I didn't think there is testing for this type of cancer yet. What should I do to make sure they don't have it or get it?

From The Lustgarten Foundation:
Dear Roberta,

As I am sure you know, most of the time (in 90-95% of cases) people are not born with genes that predispose them to pancreas cancer but rather genetic changes in pancreas DNA develop spontaneously in their cells during their lifetime.

However, there are families with hereditary pancreatic cancer, which can increase the risk of developing the disease in family members. Some DNA mutations are known to be important in hereditary pancreatic cancer and there are tests for some of these (BRCA2, BRCA1, PALB2, p16/CDKN2A, STK11, PRSS1, ATM, and DNA mis-match repair genes). Unfortunately there is no routine test that can detect Pancreatic Cancer early but there are screening programs for people in high-risk groups. These screening programs monitor the pancreas routinely using state of the art imaging techniques. This type of intense screening is typically limited to those with known syndromes predisposing to pancreatic cancer or come from a family that includes at least three affected members. You can certainly have your kids tested for the known high risk genes now, and can ask about whether they are eligible for one of the surveillance programs especially if you have a broader history of pancreas cancer in your family. A list of sites contacts for these types of screening programs can be found in our "Interview with an Expert” series on Screening and Early Detection.

From Teresa: Who is considered high risk population? I don’t have pancreatic cancer in my family but I do have a lot of type 2 diabetes including my father and I heard that is a risk factor....should I be tested?

From The Lustgarten Foundation:
Dear Theresa,

- High risk populations include people who have:
- Two or more first-degree relatives (parents, sibling, child) with pancreatic cancer, one first-degree relative diagnosed with pancreatic cancer at an early age (under the age of 50)
- Two or more second-degree relatives (grandparent, aunt/uncle, niece/nephew, half-sibling) with pancreatic cancer, one of whom developed it at an early age,
- Or a history of a cancer syndrome associated with pancreatic cancer (like Hereditary pancreatitis, Peutz-Jeghers syndrome or FAMMM)

Some studies have linked Type-2 diabetes to pancreatic cancer, but more studies are needed to better understand the role it plays in causing pancreatic cancer. Unfortunately there is no routine test that can detect pancreatic cancer early at this point but our researchers are working hard to develop one.

From Donna: When will a universal screening become available? Only the lucky ones who catch it early survive. For most, it has already spread and it's too late. How do we get our doctors to screen us? My doctor says we need a reason to do a cat scan or PET scan or insurance won't pay. Family history is not enough for my primary care physician to perform any type of screening. I am confused, because every woman gets mammograms every year even if there is no family history of breast cancer. Why can't we get screened for pancreatic cancer if there are 2 family members who have had it? I am 45 and would like to be screened.

From The Lustgarten Foundation:
Dear Donna,

Researchers are working hard to try to develop a “simple” test for pancreas cancer but, as you know, it is not available yet. The screening we currently use in high-risk families that are imaging technologies like PET and CT scans. Like most new technologies, these scans are very expensive and so insurance companies do put significant limits on their use. To prescribe one, a doctor needs to prove there is clear research data supporting their use. There is no research, as of yet that shows that there is a significant overall benefit for the majority of the population to have routine imaging tests for pancreas cancer. There is in fact concern that routine imaging screening would hurt more people than it would help. Imaging scans would find “questionable spots” in many people that are not cancer. These people would have unnecessary tests and biopsies, each of which have their own negative complications. Even in the case of mammograms and prostate screens that have been widely accepted by insurance companies, there is an ongoing debate in the field as to their relative benefit (in finding cancers early) versus cost (financial, emotional and medical complications).

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