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Confused by CT scan result: How can I get it explained?
Pancreatic Cancer | Last Active: Oct 29, 2023 | Replies (28)Comment receiving replies
I had difficulty with getting radiology to appropriately review my scans. I felt that the radiologist did not thoroughly review my CT scan. The scan was ordered by the surgeon's nurse practitioner so she contacted me with the results. The scan was specifically done to evaluate blood vessels and the radiologist did not even comment on the blood vessels. I insisted that the nurse practitioner go back and ask the radiologist to comment on the blood vessels. We had some back and forth, but the nurse practitioner did finally go back to the radiologist who reviewed and did comment on the blood vessels. I also asked that the radiologist compare the current CT with the CT prior to my biopsy since there were changes that could have been the result of the biopsy procedure done between the original CT and the follow up. Another back and forth discussion took place. Finally I was offered an appointment to discuss the findings with the surgeon. The surgeon did set up a virtual visit and we went through the CT scan report in detail. In the second instance, I had a sonogram and the radiologist did not compare the size of the tumor to the original scan, done 2 months earlier. I am a retired physician and called the radiologist myself to ask questions. Needless to say, I decided I needed to seek care elsewhere. I am grateful to have a pancreatic center of excellence within reach. Being your own advocate is essential.
Replies to "I had difficulty with getting radiology to appropriately review my scans. I felt that the radiologist..."
No offense, but not everyone has a medical background to review results/treatments and discuss/argue with doctors providing their treatment. Nor do they have easy access to pancreatic cancer centers. The closest one to me is 5 hours away and fortunately I have the funds to make occasional trips. I do not know if I have funds to actually complete treatments if they differ from what is recommended locally. I always reach out to the Pancreatic cancer centers to ask for second opinions before changing treatments or asking for additional treatments. After much research, I found out that the hospitals listed as "high volume centers" with PanCan are NOT necessarily pancreatic cancer centers nor are they comprehensive cancer centers. PanCan can not give more info than the "large volume" sites which to them is 20+ surgeries per year. I was initially seen at Cleveland Clinic and was very disappointed in their attitude and lack of explanations-other than "get your life in order". Felt I was passed off to local oncologists to receive what is considered "standard treatment". I have had research everything on my own and send questions to my local oncologist, then send questions to the nearest Pancreatic Cancer Centers where I went for a second opinion early on. I agree with you that we need to advocate for ourselves, but I wish I felt like at least one of my doctors was fighting for me at least half as hard as I have to!
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Can you please clarify-is there a listing of “pancreatic centers of excellence” somewhere? Or are you referring to the 11 cancer centers recognized in multiple texts?? As you know, every place touts themselves as experts. Thankyou!