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May 2013

From Amy: My Father died of pancreatic cancer the same year I was diagnosed with appendix cancer. I know several other appendix cancer survivors with a parent who had pancreatic cancer. I'm curious if there is any research into pancreatic cancers genetic connections to other forms of cancer or hereditary connections. I have two small boys and worry about their chances of facing this disease.

From The Lustgarten Foundation: Dear Amy,
There are some connections between appendix cancer and pancreatic Neuroendocrine tumors in that they are both start in the neuroendocrine cells.  Some inherited familial syndromes, include: Wermer’s syndrome (caused by mutations in the MEN1 gene), mutatimultiple endocrine neoplasia type 2 (MEN2), mutations in the neurofibromatosis type 1 gene.  There are no known familial connections between appendix cancer and pancreatic ductal adenocarcinoma.  If you are concerned about yourself or your children please consult with your physician to discuss your family history.

From Loretta: My mom died of pancreatic cancer in 2002 what are the chances of my sister or I getting it?

From The Lustgarten Foundation: Dear Loretta,

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 mother 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 Wendy: Pancreatic cancer runs in my family ..... what are the symptoms and is there a test that can be run to detect this cancer early?

From The Lustgarten Foundation: Dear Wendy,

The symptoms of pancreas cancer can be quite vague and they vary depending on where the cancer is in the pancreas.  Early symptoms can include:
- Weight loss for no apparent reason. 
- Pain in the stomach often described as a dull pain beginning in the stomach area and spreading around to the back.
- Jaundice or yellowing of the skin and whites of the eyes.
- Loss of appetite
- Symptoms of diabetes or diagnosis with diabetes within the past year Diabetes causes increased thirst, passing of a lot of urine, general weakness, weight loss and hunger.

FromMarci: My dad, my aunt and now my uncle all have or died from pancreatic cancer. Two died at 48, and early 50. And one is fighting it at 71. I have just been diagnosed with breast cancer. What is happening. Life is scary.

From The Lustgarten Foundation: Dear Marci,
There are some genetic mutations that can be passed in families that make them more susceptible to getting both breast and pancreatic cancers.  A defect in the BRCA1 or BRCA 2 genes, can increase the risk of developing pancreatic cancer by 2 to 10-fold (respectively). Defects in these genes also increase a woman’s chance to develop breast cancer by 5-fold.  There are Genetic tests available to check for BRCA1 and BRCA2 mutations that require a blood sample. And, if a harmful BRCA1 or BRCA2 mutation is found, several options are available to help a person manage their cancer risk. Please talk to your doctor about these types of tests for yourself and potentially your relatives.

From Michelle: My mother passed away from this awful disease in her late 40's. I'm almost in my late 40's, and have been having a lot of kidney infections. Wondering if It could run in my family and have anything to to with my kidney problems?

From The Lustgarten Foundation: Dear Michelle,
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. Kidney infections are not typically caused by these same genetic alterations and it is unlikely that your kidney infections are related to your mother’s diagnosis.

From Jen: Why aren't we doing MRI's or similar (to check for tumors) when a normally healthy person is suddenly diagnosed with type 2 diabetes?

From The Lustgarten Foundation: Dear Jen,

Almost 25 million people in the US have type 2 diabetes, most of which will not develop pancreatic cancer.  Researchers are working hard to try to develop a “simple” test for pancreatic cancer but 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).

From Bethany: What is the deal with tumor markers? My daddy has pancreatic cancer with one tumor in his pancreas and one in his liver; however, his tumor markers (CA19-9) are currently 87. Does this mean that the chemo is working?

From The Lustgarten Foundation: Dear Bethany,
CA19-9 marker is used as a relative gauge of tumor growth or regression.  Different people have different starting levels of this marker.  What is most looked at for therapy is how much the level of CA 19-9 changes after therapy. If the levels increase after therapy, then it is thought that the tumor is growing. If the values remain the same, then the disease is stable. And if CA 19-9 values decrease, then it would indicate that the disease is responding to treatment. The total levels of CA19-9 do not need to go to zero for a tumor to be responding to treatment. 

From Anita: Does anyone know if pancreatic cancer is genetic? My husband died very quickly from it and I have two boys ages 22 and 20. My brother-in-law is the only one surviving from his family and he does not know of anyone else in the family who had pancreatic cancer. Should I get my sons tested? What should I do to help them just in case they get it?

From The Lustgarten Foundation: Dear Anita,
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. 

However, there are a small number of 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.

From Elizabeth: Are there any tests that are recommended to add to a yearly physical if you have a strong family history of the disease (my mom, grandma and a couple of my grandma's siblings and then a couple more people further back)...I am 32 and would like to be doing something to monitor it as I get older.

From The Lustgarten Foundation: Dear Elizabeth,

There are screening programs for people in high-risk groups.  These screening programs monitor the pancreas routinely (typically every 6 months) 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.

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