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Ask an Expert Series on Facebook

January 2013

From Kim: My father has PC and it did go to his liver. They are doing chemo and so far it has had great results. No more tumors on liver and the pancreas tumor has no change. He goes back the 8th for another CT to verify the treatments are still working. Q- He was told no surgery once it goes beyond the pancreas but if there is no longer any on the liver would it be considered now an option for cure?

From The Lustgarten Foundation: Dear Kim,

This is definitely a conversation that your father and his pancreas cancer team should have.  There have been cases where primary tumors were removed after chemotherapy treatment has slowed or shrunk the tumor but typically these are cases where there has been no obvious metastasis.  The problem with a metastasized tumor is that you may not know all the sites where it is growing.  This is why drugs are given in the blood stream so that they can kill cancer cells anywhere they may be in the body.  However, as every case is different you should definitely ask this question of your oncology team.

From Kristen: Can you tell me what you know, if anything, about the Indiegogo project called iCancer claim that there has been a potential "cure" has been found in Sweden, but has not yet been tested? Is there truth here?

From The Lustgarten Foundation: Dear Kristen,

The iCancer group is fundraising for research and an early phase clinical trials using an oncolytic virus (a virus that infects and selectively kills cancer cells) for neuroendocrine tumor cells.  There are several different groups working on this type of technology for cancers in Europe, Asia and the US including some biotech companies.  The studies that Dr. Essand has conducted in Sweden are promising but have only been tried in the laboratory so far and many new therapies, while promising in early stages, do not prove successful in the clinic. 

From Charlene: I have chronic pancreatitis. Am I at high risk of getting pancreatic cancer? This is my worst fear

From The Lustgarten Foundation: Dear Charlene,

As you know there is an increased risk of pancreas cancer in people with chronic pancreatitis although most patients with pancreatitis never develop pancreatic cancer. The link between chronic pancreatitis and pancreatic cancer is strongest in smokers. So if you smoke, definitely stop. A small number of cases of chronic pancreatitis appear to be due to an inherited gene mutation.  If this is the case for you then you can be be enrolled in a monitoring program closely screened by their doctor.  In these families, surgical removal of very early pancreas tumors can significantly extend lifespan and even be curative.  Statistically speaking, if no treatment is given for pancreas cancer the average lifespan after diagnosis is about 4 months.

From Marie: How do we convince insurance companies about the value of EUS, MRI and gene mutation testing? As someone who had endured genetic counseling because of a very strong familial pan. can history, I was extremely disappointed in the lack of knowledge I received from my insurance company. It turned into a 4 month battle including 100 phone calls to help the insurance company understand my wish in proceeding with these beneficial tests.

From The Lustgarten Foundation: Dear Marie,

Researchers are working hard to try to develop a “simple” test for pancreas cancer that insurance companies will not have issues with 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).

From: Beth: I heard that pancreatic cancer is genetic if a parent had it what are the chances of a child or grandchild getting it and is there any blood test to tell if you have it or if your carrying the gene??

Leslee: Is there a test for early detection? My Husband passed away 4 years ago, I often think, If only they had caught it early, He would have been 76 years old today.

Susan: I am also interested in the genetic factor. My mom died of PC and my cousin.

From The Lustgarten Foundation: Dear Beth, Leslee and Susan,

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 Debra: Of the few cancers that are on the rise, the media continues to place pancreas cancer in a category associated with cancers related to obesitycancer/heart disease/aids/etc? No one I have kn. Is there a reason the media continues to label any cancer/health issue for more than what it is - own who has died of pancreas cancer was obese. If diet is an indicator, can the media just talk about diet? Non obese individuals can have a diet that may still put them at risk. Is the research any closer to being able to discuss risk factors?

From The Lustgarten Foundation: Dear Debra,

While you are right, that some dietary factors (such as red meats and excess sugar) have been connected to higher risk of pancreas cancer, obesity (both caused by diet or genetics) is also a risk factor for pancreas cancer.  Clearly, obesity is not the only risk factor and many patients who develop pancreas cancer are not obese.  Whether the increase in pancreas cancer incidence is due to diet/obesity (as the media likes to claim) or other factors or a combination of the two, is still in active research studies and the jury is not in yet.



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