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Ask an Expert Series on Facebook

November 2012

From Cynthia: I just lost my fiancé 2 months ago to pancreatic cancer. It was a tragic loss for me. He was diagnosed n Jan of this year. It spread so rapidly & he lost the battle. Why can't this particular cancer be pre-screened? He had every test imaginable & nothing until it was stage 4(terminal)... He never smoked or drank. I’m still heartbroken & baffled. How can this disease be detected n earliest stages?

From Lisa: Levi I lost my mother in 05 from this. No one could help us at the time and we never could find out how or why she got it. Since then I have had to have my gallbladder out like she did to start. Any new information or testing that can be done to catch this earlier?

From Annalisa: My mother passed away in 2004 from pancreatic cancer. No one in her family has a cancer of any kind, or passed away from cancer. What is the reason for a person to get pancreatic cancer if there is no hereditary gene in the family?

From The Lustgarten Foundation: Dear Cynthia, Lisa and Annalisa,

Pancreatic cancer is a genetic disease that means 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 and in fact 90-95% of people are not born with genes that predispose them to pancreas cancer.  Researchers are working on developing a “simple” test (like a blood or urine test) to see pancreas cancers early but unfortunately there is nothing available yet.  There are imaging (CT or PET) screening programs but they are limited to high risk families which include
•  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)

From Claire: Why can't children of parents who have died of this horrid disease be screened with an MRI routinely to see if they have it to catch it early? They do mammograms routinely why not this if it’s caught early it may be more treatable! My dad died of this and I'm so afraid it will happen to my brother, me or my children.

From The Lustgarten Foundation: Dear Claire,

Researchers are working hard to try to develop a “simple” test for pancreas cancer but, unfortunately, it is not available yet.   The screening that is currently used is for high-risk families. People at “high risk” of hereditary pancreas cancer 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) This type of screening typically uses 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).

From Angela Marie: I agree Claire, my dad passed last month after being diagnosed June 15. He went to the doctor in March complaining of back pain and the doctor told him it was arthritis after he did a bone density scan. It kills me to think that maybe if it were detected then maybe he would be alive still. Now I'm worried about getting it. What genetic testing can we do? Scans? No one in my family had pancreatic cancer but my Dad’s mother had breast cancer. What are my chances of getting it?

From The Lustgarten Foundation: Dear Angela,

Please see my response to Claire regarding testing.  With regards to your family history, keep in mind that most of the time, the genetic alterations that lead to pancreas cancer happen by chance in a cell of the pancreas and in fact 90-95% of people are not born with genes that predispose them to pancreas cancer.  However, there are some genes (like BRCA1 and BRCA2 that are found in breast and pancreas cancer families).  If you are concerned that your father may have been a carrier of these types of genetic alterations, you could certainly seek the advice of a genetic councilor to look at testing options for your family.

From Patty: My maternal grandfather died of pancreatic cancer at the age of 74, and my brother died of pancreatic cancer at the age of 44. Is there a tendency for this type of cancer to run in families or to have a predisposition? Neither were alcoholics or heavy drinkers, but both went months without a diagnosis and when diagnosed, were beyond the point of a cure or surgery. I had one doctor tell me that our immediate family should be body scanned once/year. Is that necessary?

From The Lustgarten Foundation: Dear Patty,

There are families with hereditary pancreatic cancer, which can increase the risk of developing the disease in family members. People at “high risk” of hereditary pancreas cancer 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).  Active screening in these families has saved lives.

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).  There are also screening programs for people in high-risk groups.  These screening programs monitor the pancreas routinely using state of the art imaging techniques and have been 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 John: Does the Lustgarten foundation do any online grief support? John (lost my wife 10/29 after just over 3 years). Also, I am an academic geriatrician and I am interested in the literature on nutrition in long term Whipple procedure survivors, can you point me in that direction to anything especially good out there?

From The Lustgarten Foundation: The Lustgarten Foundation does not offer an online grief support, as we're a research foundation, but below you will find a link for CancerCare's on line support group which would be beneficial for you.
http://www.cancercare.org/tagged/caregiving

Please also take a look at our issues from our "Ask an Expert" series which would be helpful for your inquiry as to the nutritional aspects for Whipple survivors.  One deals with "managing your new life after surgery" and the other deals with "nutrition".

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