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Pancreas Cancer

Same issues with diagnosis was posted 03/06/2015 10:16 am by Shelley in AR
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We had the same issues in regards to getting a diagnosis.. It was very frustrating to be told that dad had pancreatic cancer and 3 months to live yet they could not get a biopsy that confirmed this diagnosis after 3 attempts.. We also live in area where doctors know little to nothing about pancreatic cancer, the time between test was very long, and the only next step they had was to open his abdomen and 'see' what might be going on... This would have been such a huge mistake to let that happen.. When doctors say 3 months to live you dont have time to wait weeks for test and more weeks for results.. You can not let doctors that dont know this disease inside and out start cutting on patient... That could have killed him in less than 3 months. All they ever did her was put in a tube to drain billirubin, because we had no one with enough experience to even get bile duct stent in place. It was a nightmare.. With the local doctors inability to give us a definite diagnosis and really searching for how to proceed and taking forever to get testing scheduled I phoned MD Anderson and we were in Houston for an appointment with a gastro oncology surgeon on July 23, 2012. I called and got his records together and faxed to them in one day and they called 2 days later and asked us to be there the following Monday. We met with surgeon on Monday and he to suggested it could be Auto Immune Pancreatitis and the next day dad had CT scans and endoscopic ultrasound, back to Surgeon the next day and diagnosis of PC was confirmed. CT reports and films were back and biopsy results from endoscopic ultrasound. We met with medical gastro oncologist that specialized in PC on the same day and had a treatment plan. The following day another surgery was done to drain an abscess on the liver found on CT that was staph acquired at local hospital when drain was placed.. The only appointment actually scheduled when we went to MD Anderson was the initial meeting with gastro oncology surgeon. They did in 3 days what local doctors had not been able to do in 3 weeks!!! MD Anderson was a true blessing, they make things happen there in an amazing way. There is no waiting and wondering.. It is like being in a totally different world that operated like nothing I have ever experienced in the medical field..

MD Anderson has extended my dad life way beyond any hope we would have had if we had stayed with doctors here locally.. My dad would have not lived 3 months had we not went.. Local doctors never offered suggestion that we might seek treatment from specialist and discouraged it when I approached them with the idea saying there was nothing anyone could do for my dad and should spend the time we had left getting his affairs in order and continued to say he had 3-6 months at the most.. I did asked his PCP to call and make a referral to MD Anderson and 3 days later he still had not called them so I called them myself.

The reality of the disease and prognosis has not changed.. It will take his life. And I am terrified every day. I have been grieving his death since the day we first heard the words PC. It is a difficult journey even on the best days. But I am so thankful we made the decision to get treatment from doctors that specialize in this disease. 3 months survival prognosis has transformed into 31 months and still fighting strong on this very day!!! I can not begin to tell you the adventures we have had and memories we have made in the past 31 months that would have never happened. I continue to pray for a miracle, that he will be healed, but if that never happens I know we have seen many miracles in the past 31 months...

God's Blessings, Shelley

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*DISCLAIMER: This page is an unmoderated forum, and the opinions expressed herein do not necessarily reflect the viewpoint of The Johns Hopkins Medical Institutions. Patients are advised to consult their personal physicians before making any medical decisions.
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