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Ask an Expert Series on Facebook

December 2012

From Laurie: Inoperable pancreatic IPMN, what causes death when it gets to that point, as much as I look I can't determine that.

From The Lustgarten Foundation: Dear Laurie,

There is not a straightforward answer to this question unfortunately Inoperable IPMNs, if uncontrolled by chemotherapy will most likely metastasize into other organs causing them to function poorly or not at all.  Even in the 30 to 40 percent of patients where the pancreas cancer has not metastasizes significantly, the mass of the tumor will cause enough damage to the pancreas and its surrounding tissues (including the liver) to cease to function properly.

From Dawnella: How much research is going toward nueroendocrine study?

From The Lustgarten Foundation:  Dear Dawnella,

The Lustgarten Foundation does not focus on neuroendocrine tumors specifically.  There is a good deal of overlapping research between adenocarcinoma and neuroendocrine tumors that is being pursued.  

From Kelli: What is needed to know for testing? Should people just get tested to check if it is a possibility? My father died and I know that really when found it is already a death sentence at stage four as that is when symptoms show, what can we do to find it in stage one? Can it be found early if looking for sure?

From Abbi: What exactly is the early detection test? My father passed away from p/c...

From Leslie: Are there any studies being done for early detection if my mom and grandmother passed away with pancreatic cancer? I want to get a scan but it is so expensive!

From Lori: I am also wondering if there are tests that should be conducted to check for a genetic risk. My mom passed from it. I also know it is greatly a random disease. I am an oncology nurse and see it everyday. So sad and horrific.

From The Lustgarten Foundation: Dear Abbi, Leslie, Lori and Kelli,

At the moment there is no early detection test.  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 Lori: My boss just passed in September from moderately differentiated adenocarcinoma with innumberable liver mets. Genetic testing revealed K-Ras mutant gene. His sons are 14 and 21 - when/should they be tested to see if they have the gene. What is the process? Thank you and God Bless everyone affected by this horrific disease.

From The Lustgarten Foundation: Dear Lori,

For the moment, there is no test to see if a person has a K-ras mutant gene.  K-ras becomes altered in the cancer cells only not in a person so you have to find the cancer cells first.  However, we do have researchers actively working on a test that will “find” the random cancer cell (with K-ras mutations) in the bloodstream and are bringing this test into clinical trials shortly.  

From Glenda: I am a Pancreatic Cancer Survivor for 5 years...Whipple...Neuroendrocan Tumor. What is my prognosis for this returning ever? Every one keeps saying you are at the 5 year mark...eeek! I am feeling wonderful with just minor gastro problems.

From The Lustgarten Foundation: Dear Glenda,

Of course the farther out you are the better and the specific classification of the tumor you had does play a role but tumor free rates for this type of tumor after 5 years do approach 100%.

From Leslie: Both of my husbands parents suffered at this horrible disease. What can we do to prevent this from happening to him?

From The Lustgarten Foundation: Dear Leslie,

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) and 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 Jeanette: My mother was diagnosed with stage 4 metastatic pancreatic cancer 7 years ago....She passed away 2 months later at 65. There was no history of cancer in her family and her parents both lived till well into their 90's. I have three siblings...what are our chances of inheriting this deadly form of cancer? Are there any clinical trials that would detect the cancer gene in us?

From The Lustgarten Foundation: Dear Jeanette,

I am sorry for your loss.  The likelihood of you and your siblings inheriting a familial pancreas cancer gene with no other history in the family is the same as everyone else so 12.1 per 100,000 or 0.012%.

From Linda: Are there any support groups in Lincoln NE? We haven't heard about much except hospice. This is an ugly, lonely disease.

From The Lustgarten Foundation: Dear Linda,

Please keep in mind that this support group is not specific to pancreatic cancer but is located in Lincoln, NE.

This is an online support group that is specific to pancreatic cancer.

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