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Just diagnosed with pancreatic NET stage 1

Neuroendocrine Tumors (NETs) | Last Active: May 14 8:56pm | Replies (152)

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@jaxterdb

Hello! I had an NET show up on a CT scan that had been done in November, 2007 because of recurrent pain on my right side. The doctor called next the next day and told me that nothing on the CT showed anything that would cause the pain. However he said it showed a mass in the tail of my pancreas. They did a biopsy and told me it was malignant. I was given an appoint meant with a specialist for about a week later. In the meantime I started Googling pancreatic cancer and found out that I had a 5% chance of surviving the next 5 years. I assumed I was going to be dead in less than 5 years.

I didn’t have much hope till I saw the specialist. He immediately reassured me that if you had to have pancreatic cancer this was the type to have. He said the tumor was 2.5 centimeters and they generally didn’t start to spread till about 3 centimeters. I was scheduled for surgery for Friday, January 11, 2008. He told me that it would take about 4 hours and I should be able to return to work the following Monday.

The surgery was more complicated than they thought, because of a blood vessel, and lasted just over 10 hours and they took my spleen as well. I was put in ICU and Saturday was moved to a step down room on the same floor. But, unfortunately, I went into total respiratory arrest that evening. I spent the next week in ICU for a nasty case of double pneumonia.

But the surgery was successful and over 16 years later, I’m still hanging in there. I would recommend you get a second opinion on surgery. I would think it would be better to get the tumor out while it’s still small.

But the main thing is to not worry too much. You’re lucky that, like me, it was caught early, before there were symptoms.

Good luck!

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P.S. I am a 73 year old male.

Hello @jaxterdb and welcome to Mayo Connect. I appreciate your encouraging post about your experience with a pNET. You echo what many of us have found: a second opinion is really important. As you have experienced, it really makes a difference.

Since your surgery was 16 years ago. What did you find you needed after surgery? Did you follow a specific diet plan? Were you given any medications to help with digestion? How frequently do you have follow up scans?