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Pancreas Cancer

AnnaDora was posted 02/22/2014 12:48 am by Shelley in AR
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AnnaDora, always glad to share... Always ask any questions you have on your mind. this board is all that got me through the first 6 months of this journey...

My dad had a loss of appetite and a pain under his right rib cage for only a few weeks and some slight weight loss. When he went to the doctor he sent him for a CT of his gallbladder certain they would be taking it out that very evening. When the CT came back normal on the gallbladder and no other abnormalities he sent us to a Gastro doctor. There they did more labs and we waited a few days for those to come back. His liver numbers were elevated and his CA 19-9 was in the 600. Over that weekend my dad got very jaundice. A lot of things happened in a short amount of time I guess but it seemed like it took forever. He first had the CT on June 28th and we were at MDA on July 21st. Three different gastro doctors did procedures the following week as I would not stand for any delay in finding the source of his symptoms. He had a colonoscopy and EGD which were normal, then next day an ERCP with attempted stent for bile duct and biopsy, which the doctor that tried to place the stent did not have enough experience to make it happen. Next doctor, only one in the tri-state area certified to do EUS did one with biopsy, both biopsies came back inconclusive. Could not make a diagnosis form tissue but neither showed any cancer cells.

The tumor was on the CT scan very clear the radiologist that signed the scan either did not ever look at it or she should not have ever been reading CT scans because she did not have the knowledge to identify a tumor. None of the Gastro doctors ever looked at the CT scan they just looked at the report and moved forward with more test and procedures taking for granted that the ct report was accurate. The gastro doctor actually was the one that said dad had pancreatic cancer even though the biopsy came back with no cancer cells. He said he just knew that was what he had but with no evidence how could I know for sure he was right and of course I wanted to believe he was wrong!!! Gastro doctors guess was the tumor was so small it could not be seen on the CT scan.

Our local doctors wanted to sign him up with hospice and told him to get his affairs in order that he might have 3 moths. I knew I was not going to let him die from something we had no evidence he even had because the doctors here were not skilled enough to do more than guess at a diagnosis and send him home to die. I had heard many good things about MDA and I wanted my dad to have the best care possible if we were going to have any hope that he might outlive the doctors prognosis of 3 months. I just knew I could not sit here and do nothing and let him die without a fight.

Basically the doctors at MDA said that the CT scan was not even looked at or whoever read it was an idiot to miss a mass as large as what they found on the same CT scan. It would have been a medical malpractice suit but in order to do that you must be able to prove the patient would have lived more than 24 months if the tumor had been diagnosed on the scan. Because the stats say that life expectancy for PC patients is less than 12 months there was no way to file suit against the radiologist that missed the tumor.

Looking back in hindsight my dads symptoms most likely started a couple years prior to the right side abdominal pain and loss of appetite. In Jan of 2010 he was diagnosed with diabetes type 2 with no family history of diabetes. I have read hundreds of medical journal articles on PC now that say any time a patient has a new onset of diabetes over the age of 55 with no family history they should always be screened for PC. Looking back I realize his diabetes was more likely a symptom of PC. The following year he had back pain and thought he had a disk problem which they did not find but a surgeon did operate and did some repair on degenerative disc. Again I think the tumor was present and pressing on some nerves in his spine which the surgery must have altered for his back pain to get better. In Jan of 2012 he could not control his diabetes with the metformin 500mg 2 x day so the doctor just increased his does to 850mg 2 x day. Then in June 2012 was when the other symptoms started and by that time he had a huge tumor that was inoperable. I so wish I had know in Jan of 2010 with the diabetes diagnosis what I know now. This could have turned out much different if I had been aware that there could have been a more serious problem. That was back when I still trusted that doctors knew what they were doing, not anymore!!!

We had a rough start but I am so glad we were able to get in to MD Anderson as fast as we did and move forward with treatment. March the 6th will be 21 months since diagnosis.

Best wishes and will keep you in my prayers, Shelley

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