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Anyone have pNET in pancreatic tail & had distal pancreactomy?

Posted by kathyfujii @kathyfujii, Apr 11 11:23am

I've just been diagnosed with a 3.8cm pnet in my pancreatic tail involving arteries and veins in the spleen. Waiting for 2 surgical consultations. Is surgical resection all done laparoscopically. What are recovery experiences.

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kathyfujii | @kathyfujii | 1 day ago
In reply to @christobelle89 "@kathyfujii I am not a doctor, nor do I have any medical background, but I "believe"..." + (show)
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@kathyfujii I am not a doctor, nor do I have any medical background, but I "believe" that since they are now monitoring my blood for circulating cancer DNA that it is at least one of the modes by which the cancer is spread. They discovered my cancer almost serendipitously. It was very small and what they call the K67?( my understanding is that has something to do with the rate at which it is likely to spread) was very low. After a biopsy they have said that the cancer in my liver is the same....so "evidently?" slow growing. In my original surgery they removed the cancer from the tail and also removed the spleen. Hope my unmedical explanation was helpful.

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@christobelle89 How long ago was your surgery and what did they do for your liver.

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christobelle89 | @christobelle89 | 23 hours ago
In reply to @kathyfujii "@christobelle89 How long ago was your surgery and what did they do for your liver." + (show)
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@christobelle89 How long ago was your surgery and what did they do for your liver.

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@kathyfujii
I apologize for not remembering how long the surgery was. It was in Feb of 2017 at Hopkins and I was there for 4 or 5 days? after. They also removed the spleen but did not do anything to anything else as my cancer was very small and there were no mets as it had been discovered serendipitously. I did get three meningitis shots-two in one arm and one in the other as I didn't have a spleen. When I got home, they were what hurt as I had to sleep on my back. I had to go back to Hopkins to have the drains from the laparoscopic surgery removed and was astonished as a non-medical person at how much tubing was there. My mets to the liver were discovered with the annual CT in late November and then verified with an MRI and PET. I am on Lanrotide and having problems with high blood pressure although the mets appear to be responding to the Lanreotide. We are working on the high BP.

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