CancerCompass message board discussion started by tlmtlm on 3/15/2008 http://www.cancercompass.com/message-board/message/all,22029,0.htm Fri, 29 Aug 2008 00:00:00 GMT Fri, 29 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have many symptoms of pc and am very sick, but had a normal ct so my medical plan/doctor won't do EUS or ERCP, are saying it is irritable bowel syndrome.  I have an appointment Monday with the hospital's patient advocate to try to convince her to intervene and get these tests done.  I want to give her copies of reliable, documented information showing that :1. ct scans miss many small tumors                                                   2. EUS and ERCP are more reliablediagnostic tests3. Sometimes people with pc have many normal test results and are only diagnosed when a doctor goes in to take a look.4. Many people with pc are misdiagnosed and/or too slowly diagnosed, and so when they finally are diagnosed it is advanced and treatment options/prognosis is limited, a situation that could be prevented witha more agressive diagnostic timeline.I have seen many messages about 3 and 4 on this message board but need to find sometime from a medical source.  I would appreciate any web sites you can refer me to.  Thank-you, Teresa tlmtlm Sat, 15 Mar 2008 00:00:00 GMT  On 3/15/2008 tlmtlm wrote:I have many symptoms of pc and am very sick, but had a normal ct so my medical plan/doctor won't do EUS or ERCP, are saying it is irritable bowel syndrome.  I have an appointment Monday with the hospital's patient advocate to try to convince her to intervene and get these tests done.  I want to give her copies of reliable, documented information showing that :1. ct scans miss many small tumors                                                   2. EUS and ERCP are more reliablediagnostic tests3. Sometimes people with pc have many normal test results and are only diagnosed when a doctor goes in to take a look.4. Many people with pc are misdiagnosed and/or too slowly diagnosed, and so when they finally are diagnosed it is advanced and treatment options/prognosis is limited, a situation that could be prevented witha more agressive diagnostic timeline.I have seen many messages about 3 and 4 on this message board but need to find sometime from a medical source.  I would appreciate any web sites you can refer me to.  Thank-you, TeresaMy friend got sick in june 2007 diareah vomiting stomach pain radiating to his side and back he had no insurance and went to er and patients first and they kept saying ulcers and finally we got him in with voc rehab and got the necessary tests done upper gi colonostomy and mris and cat scans and while they were in biopsys on pancreas and liver and diagnosed him with pancreatic cancer hes went from 230-240 to 146 since august. They say they can't detect it early but you know what they say when you have diareah and vomiting its just a virus. Its an awful disease that spreads quick. I would request those tests. Good luck     dreamcatcherchris Sun, 16 Mar 2008 00:00:00 GMT My brother became sick in August '07. ..he also has no insurance.  Fortunately, he was admitted to the hospital...and had either a EUS or ERCP....I don't remember, as he has had at least 2 of each since that time..until December...At least 3 times they came back with no cancer diagnosis....they did "brushings' with these procedures...BUT of course nothing...showed up.  Finally at the end of December...VOILA...an ERCP showed pancreatic cancer.....He is now in a clinical trial ......chemo and radiation...and a trial drug....he is just about to get approved for Medicaid...which will help...But the hospital has kept on seeing him...doing the tests...etc....not sure why...it is a teaching hospital...but I THINK a hospital has to take you regardless....!!??   He has locally advanced pancreatic cancer....as it has wrapped around a blood vessel DURING THE LONG  4 MONTHS IT TOOK TO FINALLY DIAGNOSIS IT...!!!!I have learned from this....when I have any type of symptoms, you bet I will keep having test after test until they find something , if it is there!!!It is a SHAME that pancreatic cancer is not able to be diagnosed somehow..someway...until it is too late....  INSIST ON TESTS !!!!!       orchidprincess Sun, 16 Mar 2008 00:00:00 GMT What we need to do is advocate for  more funding going to research in order to come up with an early detection test.  Pancreatic cancer is the 4th leading cause of cancer deaths and the least funded, $75 million in 2006 compared to breast cancer which is the 3rd leading cause of cancer deaths, $585 million.  Please contact your local Senators and Representatives.  For great info go to www.pancan.org.  This is the Pancreatic Cancer Action Network website.  It can be diagnosed by the following tests:  CT scan, EUS, ERCP or PET scan.  However, the majority of the time by the time it is detected it has metasticized and is stage IV. suestl33 Fri, 21 Mar 2008 00:00:00 GMT  On 3/16/2008 orchidprincess wrote:My brother became sick in August '07. ..he also has no insurance.  Fortunately, he was admitted to the hospital...and had either a EUS or ERCP....I don't remember, as he has had at least 2 of each since that time..until December...At least 3 times they came back with no cancer diagnosis....they did "brushings' with these procedures...BUT of course nothing...showed up.  Finally at the end of December...VOILA...an ERCP showed pancreatic cancer.....He is now in a clinical trial ......chemo and radiation...and a trial drug....he is just about to get approved for Medicaid...which will help...But the hospital has kept on seeing him...doing the tests...etc....not sure why...it is a teaching hospital...but I THINK a hospital has to take you regardless....!!??   He has locally advanced pancreatic cancer....as it has wrapped around a blood vessel DURING THE LONG  4 MONTHS IT TOOK TO FINALLY DIAGNOSIS IT...!!!!I have learned from this....when I have any type of symptoms, you bet I will keep having test after test until they find something , if it is there!!!It is a SHAME that pancreatic cancer is not able to be diagnosed somehow..someway...until it is too late....  INSIST ON TESTS !!!!!How did they desribe the cancer they found in your brother during the ERCP? Did they find spots or legions? What exactly did they say?       shirl110 Mon, 31 Mar 2008 00:00:00 GMT