Patient Experience: 14 Days, No Diagnosis

Today my father went in for his EUS to get a biopsy from the tail of the pancreas where they believe his possible cancer resides. The hospital called on Friday and asked if they could move up his procedure time to 11am. My father was all excited about that since he knew he would have to fast.
My parents were called on Monday the 7th of October and asked to arrive by 9am, to get him signed in, prepped, and ready for his procedure at 11am. I arrived at 10:30 to make sure I saw my father before they took him back.
Well, they didm’t come and get my father until 11:30, and no one came back to give an update or any additional information as to why, they just left my parents sit in the ‘on deck circle’ until they decided to take him into the procedure room.
After an hour and a half they came and informed us that we could go back to recovery. Again, it took a nurse almost 20 minutes to come back to where we were, introduce herself to my father and mother, and to say that the physician would be down shortly.
The physician was very friendly and came down within 5 minutes. He said that the biopsy went very well. He performed a fine needle aspiration to get cells from the lesion in question. The pathologist was present and made sure that there were enough cells to run the various stains, tests, and to get a definitive diagnosis. The pathologist originally said he would give us a preliminary, but after the biopsy, decided he would wait until he had all the stains and specimens back and final report was done.
Which brings the additional news, they did 8 biopsies. 5 came from the pancreas and 3 came from the liver. Apparently as they were scanning to get to the pancreas lesion, they scanned and discovered two additional lesions in the liver. One was close enough that they could get tissue, the other was too ‘deep’ and close to the portal vein for them to biopsy. However, he said that both lesions looked same in makeup.
Of course I asked about my fathers blood work. The CA 19-9 and the physician said it was elevated, however that does not mean it is cancer. I gave him a look and said, let’s be honest. He has classic symptoms of pain, weight loss, sweats, fatigue, and a raised level in his blood. You found multiple lesions in his liver and one in his pancreas. The only question is what is the primary, and what is metastatic, or hopefully one is benign.
The physician was a bit take off guard by my candor, but then said yes. Tomorrow we will know more, and then we can give better direction.
My parents said it was good news because the procedure went well, my father isn’t in pain, he can go home, and there is the possibility this could all be benign.
Hope is powerful. I have witnessed it perform miracles in people, families, and children. I have seen how cancer changes lives and makes people powerful and courageous. I only wish that I will live up that too.
The power to understand my role in all of this with my father. It is to be his advocate and allow his voice and wishes to be heard. Not to muddle them with my mothers, my own, or his physicians. To be strong and stand for his voice and his decisions.
19 days total; 14 days without a diagnosis; 2 imaging studies with a small amount of value; 3 cost discussions; 7 MD’s; 1 stent; 1 EUS; 8 biopsies; 3 lesions (1 tail of pancreas, 3 liver); 1 appointment sent away due to lack of radiologist; 1 GI Surgeon; 1 tentative workup plan to be scrapped; 2*1.5 hour trips back and forth to tertiary center; 0 Diagnosis
I think the physician today did a great job, but again, if patients want a simple yes or no, does it mean you need to know everything about the cancer?
As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM
#PtExp #PX #cancer #clinicalpathways #hcldr #hccosts #hcsm

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