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.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Profile picture for kathyfujii @kathyfujii

@christobelle89. I have a question on how the mets have metastasized to the liver after the pancreatectomy and Splenectomy removed the Pnet. Is there still a pathway to spread after the tumor is removed. What was the immediate medicinal treatment after your surgery.

My liver ablation for 2 small lesions is next month followed by pancreactomy/splenectomy. I might have been naive that it would not produce further lesions after removal.

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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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Profile picture for katzen5 @katzen5

I was just diagnosed, yesterday in fact, with pancreatic cancer, with a mass 4.9x3.8 cm involving the distal pancreatic body and tail with infiltrative features and a small adjacent cystic 1.5 cm lesion .
Is this the right group for me. I haven't seen my doctor yet, will have an appointment this week.

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@katzen5 Hi and welcome to Mayo Connect. You already got some great input. Pancreatic cancer is the location of the cancer. As others suggested, the type of cancer usually determines treatment. What led up to your diagnosis? Did you have any symptoms? What tests resulted in the diagnosis of pancreatic cancer? Thanks.

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Profile picture for christobelle89 @christobelle89

@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 Thank you for the response. That makes sense so I need to ask the doctors. How long ago was your original pancreatectomy. Is your monitoring just through blood work or CT exams in your liver.

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Profile picture for katzen5 @katzen5

@mcharlesfrancis , thank you so much for your encouraging words, I truly appreciate it.
Also thank you for the list of questions I should ask my doctor. I will print your answer and take with me as soon as I get my appointment.

I still seem to be in a daze as this was so unexpected.

I will keep the group up to date.

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@katzen5 Thank you to all that responded to my email. I had my appointment with my doctor late on Tuesday. We, my husband, doctor and myself sat there in stunned silence, then we got down to business. I will need more testing and a biopsy for the final diagnosis. We talked about possible treatments and talked about the what ifs !!! I also received a call from my GI doctor who has ordered another CTscan with contrast of the pancreas and depending on the results he will do an endoscopy with ultrasound and possibly a needle biopsy. The scan is scheduled for next week.so it is just the waiting game and trying not to worry.

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Profile picture for Turkey, Volunteer Mentor @tomrennie

@katzen5 Hi and welcome to Mayo Connect. You already got some great input. Pancreatic cancer is the location of the cancer. As others suggested, the type of cancer usually determines treatment. What led up to your diagnosis? Did you have any symptoms? What tests resulted in the diagnosis of pancreatic cancer? Thanks.

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@tomrennie Hi, in answer to your question, the CTscan was done to look for 'bleeders 'as I have had some disturbing bloodwork results, none were found but a mass was found on the pancreas. The radiologist was concerned and suggested Pancreatic protocols .

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Profile picture for katzen5 @katzen5

@katzen5 Thank you to all that responded to my email. I had my appointment with my doctor late on Tuesday. We, my husband, doctor and myself sat there in stunned silence, then we got down to business. I will need more testing and a biopsy for the final diagnosis. We talked about possible treatments and talked about the what ifs !!! I also received a call from my GI doctor who has ordered another CTscan with contrast of the pancreas and depending on the results he will do an endoscopy with ultrasound and possibly a needle biopsy. The scan is scheduled for next week.so it is just the waiting game and trying not to worry.

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@katzen5 Unfortunately, you have to let the process work its way through so you can get an accurate diagnosis. The waiting game and not worrying is very, very difficult. It sounds like your meetings with your doctors have been informative. You're aware of the what ifs. I suggest educating yourself on the testing and possible outcomes from reputable sources. The more you know, the better prepared you folks will be for any outcome. Do you have any favorite research resources that you use?

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