I Am… Choosing When to Act
A story about decisions, timing, and life with a pancreatic neuroendocrine tumor (pNET) in honor of World Neuroendocrine Cancer Day (November 10)
“I was told I had a 1.4 cm neuroendocrine tumor on the tail of my pancreas. It hasn’t spread. My doctor said we could wait six months and re-scan — or have surgery now. I didn’t know which was scarier: removing part of my pancreas or waiting to see what happened next.”
In the Smart Patients pancreatic neuroendocrine tumor cancer (pNET) community, that question, “Should I have surgery or wait?” sparked one of the most thoughtful conversations of the year.
What My Community Said
“Why wait to see if it grows?” one member asked.
“My husband’s surgery saved him,” another replied.
And from a survivor whose pNET had spread:
“After four oncologists, I finally found one who operated on my pancreas tail and removed what he could from my liver. If I could’ve had surgery earlier, I’d not even think twice. Surgery is truly successful when you can still catch it early.”
Across dozens of replies, members agreed that each person’s decision is deeply personal, but the uncertainty, the fear, and the desire to act before the disease does, was the same for everyone.
What Makes pNETs Different?
Pancreatic neuroendocrine tumors are rare. Less than 10% of all pancreatic cancer diagnoses are pNETs, and they behave differently from the more common and aggressive pancreatic adenocarcinoma.
Different origin: pNETs arise from hormone-producing cells (the endocrine pancreas), not the ductal cells where adenocarcinoma starts.
Variable behavior: Some grow slowly for years, while others metastasize unpredictably.
Treatment options: Surgery is the only potential cure, but other treatments, such as somatostatin analogs (octreotide, lanreotide), targeted therapies, or PRRT, can slow or control growth.
Decision threshold: Many specialists recommend surgery once a tumor reaches 2 cm or larger, though some advise earlier removal based on location, grade, or patient factors.
This is why the most common question is: When is the right time to act, and how do I decide what to do?
Why Some People Wait and Others Don’t
When someone learns they have a tumor in their pancreas, the first instinct is often, “Take it out!” So it can be hard to understand a “Let’s wait and monitor” response. Hesitation to operate may be due to a patient having other risk factors that may outweigh the benefit at the moment. What makes surgery more urgent is the fear of spread to blood vessels or the liver, the emotional burden of living with cancer, and a sudden surprising scan change given the unpredictability of pNETs.
Neither path is wrong. What matters is understanding your tumor’s biology and your own tolerance for risk and waiting.
That’s why one Smart Patient said: “Waiting felt safe until it didn’t. Once I knew more about my tumor, the decision became clear — and I could act with confidence.”
As frustrating as it can be, there’s no one right answer. Some people choose watchful waiting, others opt for immediate surgery, and many go through both over the course of their illness. What they share, though, is the need for clear understanding - which comes rapidly by connecting with others facing the same rare decisions.
To learn more and find important resources: Pancreatic Neuroendocrine Tumors (PNETs) or read this recent blog: Pancreatic Neuroendocrine Tumors: PanCAN Offers Support, Resources, Ways to Connect. Thank you to our partner, the Pancreatic Cancer Action Network, for providing these valuable resources.