CancerCompass message board discussion started by Whelan on 9/26/2006 http://www.cancercompass.com/message-board/message/all,7027,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have been writing messages concerning my father's pc diagnosis and the info I have received back is so helpful. With all the info my family has been receiving we have talked to a few docs who said that pancreatic canceris very hereditary. My fathers mother , two aunts, my 48 year old cousin have all passed away as the result of pc. We are doing everything to not let this happen to dad and with five siblings we do not know what we should be doing to get screened for this awful cancer. Are there any genetic counselors who screen or do blood tests markers for this? Whelan Tue, 26 Sep 2006 00:00:00 GMT Actually most PC is not hereditary. The estimate is that only about 10% appears to be. Even though small, relatives of patients with pancreas cancer have an increased risk for developing pancreas cancer themselves, and the National Familial Pancreas Cancer Registry (NFPTR) now contains over 250 families in which two or more family members have had pancreas cancer. There is research at Johns Hopkins attempting to discover the reasons why pancreas cancer runs in these families. Anyone wishing to join this registry or wishing to learn more about familial pancreas cancer may contact Alison K. at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----. She may be able to help with genetic screening. I am not sure how or where it is being done. Oncrx Fri, 29 Sep 2006 00:00:00 GMT My grandmother was very strongly urged to go for genetic testing by one of the oncologists we met with. (Her son also died of pc 10 years ago) We asked the onc. we are with now if that was a worth while thing to do. He said no. They have not yet found the specific gene linked to pc. Studies have show it to run more commonly in certain races like those of the Jewish decent but nothing definite. The cost is another concern. We were told it would cost us about $6500.00. I doubt insurance would cover it and even if they did, it would raise a red flag with them. Another consideration was that my grandmother would feel aweful if she found out she might have passed this dreadful disease to any of her family members. We just have to be more aware of our health and keep our doctors informed this has run in the family. I hope this helped. Denise Dldil3 Sun, 01 Oct 2006 00:00:00 GMT Pancreatic Cancer does run in families. I am not sure, like you said, that I would my Grandmother to take the blame for her son's death from pc. However, there are other direct relatives that may want to be tested or at least look at early dectection. While JHH has the Family Registry, (and you should register) other hospitals are doing similar work. There was a PanCan article about early detection for familial pc, several issues ago. I believe the work was being done at Virgina Madson. You can also alway request regular EUS and CA 19-9 as a regular part of your medical work up. Ldm58 Thu, 12 Oct 2006 00:00:00 GMT lbd48 Can you please let me know what article you are referring to that was printed "a few issues ago"? Also , do you know the name of the article? I do not know much about what EUS is or if the tumor marker CA19-9 should be a part of our familily's regular checkups since we have so much pc in our family. Thanks for the helpful info -----Whelan Whelan Tue, 17 Oct 2006 00:00:00 GMT