NET tumor of pancreas (1 cm) diagnosed

@jagzandsherz You, @ln100, have made several replies on whipple discussions, but I don't see that you ever created a post. To search for discussions, click on the magnifying glass at the upper right of this page. Type in your search criteria. Click on the magnifying glass again. You will see your search results. Let me know how that works.

Sorry I am just seeing this and my info may not be helpful now. At 69 I was diagnosed with PNET via an incidental finding ( CT for kidney stones). It was 2cm and was removed via enucleation. I did not have any complications. I was in the hospital 5 days and it was a solid 4 weeks before I felt like myself, but for the past 18 months have felt great.

Hello, @anneliza, and welcome to the NETs support group on Mayo Connect. How wonderful that you are doing so well after surgery to remove a PNET. You mentioned it was removed via enucleation. Is that similar to a Whipple procedure?

What type of follow-up has been recommended post-surgery?

@hopeful33250 , one of my surgeons described it as "scooping a grape (the tumor) off a bowl of jello (my pancreas). I have not had any follow-up treatment. I have a scan yearly.

I am 70 years old and my NET on the ail of my pancreas was also found incidentally. I am now waiting for an MRI of my pancreas and I suppose a referral to another doctor. The thoracic surgeon does not want to operate on my lung tumors (slow growing) until I have had my pancreas checked out. I am worried.

@mmedinnus1 Hi and welcome to Mayo Connect. Sorry to hear about your pancreatic NET. I have one too. You said that it was found incidentally. How was it found? How was it determined to be a NET? I am just try to learn where you are in the diagnosis process. How are you feeling overall?

I am glad to hear that you have a scan yearly, @anneliza. Did you lose much weight after your surgery?

@tomrennie well it's kind of complicated but in a nutshell I was having pain over my kidney area so after that was ruled out I went to see the spinal Doctor who said I had a couple of discs that were going out of place due to my worsening spinal stenosis and while he was looking at the MRI he noticed some spots on my kidney. So I did a CT scan of the kidneys and that showed the spots were just like calcification or nothing to be worried about but then they also CT the lungs while they were doing the kidneys and that showed tumors in the lung area so then they went and did a PET scan of my lungs and those came up hot on the Pet Scan but also so did the tell to my pancreas. In fact they said that came up hotter than the tumors in my lung. And they thought it was a narrow endocrine tumor. September 4th I have an MRI of the pancreas and after that I assume then I'll get sent over to that department because the thoracic surgeon said the tumor on my pancreas needs to be looked at before the lung because that is a very slow growing tumors that are just confined to that area it's not anything that's going to spread

@mmedinnus1: I believe NET patients, whether it’s Radiologists, Oncologists, Surgeons, etc NEED TO HAVE AlOT of experience dealing with the unique way NET tumors behave & best treatment. For instance Surgeons will admit “Cut it ALL out” is their mantra. NET surgeons will tell you they are very careful to only cut the tumor and leave as much healthy tissue as possible!
Beware of the “Hard Sell” many surgeons deal in fear! Just my opinion! dbamos1945

@hopeful33250 Initially I had no appetite. At one of my follow-up visits my surgeon stressed that I needed nutrients in order to heal properly, so I made a real effort to eat. My appetite was back to normal within 6 months.