Have you ever heard of neuroendocrine tumors (NETs) or carcinoid tumors and wondered what they actually are? You’re not alone. These rare tumors don’t get a lot of attention, but they’re important to understand—especially if you or someone you love has been affected.
In this blog post, we’ll break down what carcinoid and neuroendocrine tumors are, how they show up in the body, and the treatment options available. We’ll also explain everything in plain language to help you feel more confident and informed.
What Exactly Are Neuroendocrine Tumors?
Neuroendocrine tumors (NETs) are a special kind of tumor that forms in cells called neuroendocrine cells. These are unique because they have traits of both nerve cells and hormone-producing cells.
Now, that might sound a bit complicated, but think of these cells as the body’s messengers—they can release hormones into your blood and help coordinate functions like breathing, digestion, and more.
But what happens when these cells grow out of control? That’s when a neuroendocrine tumor can form.
Some NETs grow slowly and may not cause problems for years. Others can grow faster and spread to other parts of the body. Like other tumors, they can be benign (non-cancerous) or malignant (cancerous).
What Are Carcinoid Tumors?
Carcinoid tumors are actually a type of neuroendocrine tumor. They most often develop in the digestive tract (like the stomach or intestines) or in the lungs, but they can pop up in other places, too.
Many people confuse carcinoid tumors with more typical cancers, but they tend to grow much more slowly. Think of carcinoid tumors as the “quiet” or “sneaky” kind of cancer—they can hang around without making much noise.
Common Places Where NETs or Carcinoid Tumors May Appear:
- Gastrointestinal (GI) tract – Stomach, small intestine, colon, or rectum
- Lungs
- Pancreas
- Appendix
Sometimes they’re found by accident during surgery or imaging for another issue!
What Causes These Tumors?
To be honest, doctors don’t fully understand what causes neuroendocrine or carcinoid tumors. However, in some cases, they seem to be connected to inherited conditions, like multiple endocrine neoplasia type 1 (MEN1). Overall, they are pretty rare, which can sometimes make them hard to diagnose.
Signs and Symptoms: What Should You Look For?
One of the trickiest things about NETs and carcinoid tumors is that they can go unnoticed for a long time. Since they often grow slowly, many people don’t feel anything unusual until the tumor has grown or spread.
Here are some common symptoms to look out for:
- Digestive issues: Stomach pain, cramps, diarrhea, or weight loss
- Wheezing or coughing – Especially for tumors in the lungs
- Flushing of the skin, mainly on the face and neck
- Fast heartbeat or palpitations
- Fatigue – Feeling unusually tired or weak
Not everyone with a NET will have all these symptoms. In fact, many people don’t have any signs at all in the early stages!
How Are Neuroendocrine Tumors Diagnosed?
Doctors have a few tools to figure out if someone has a NET. These tests help find tumors, figure out where they started, and decide how fast they might be growing.
Common tests include:
- Blood and urine tests – These can detect unusual hormone levels
- Imaging tests: Like CT scans, MRIs, or PET scans to see inside the body
- Biopsy: A sample of the tumor is taken to check under a microscope
- Endoscopy or colonoscopy: For tumors in the GI tract
Once doctors know what they’re dealing with, they can come up with a treatment plan that best fits the patient’s needs.
Treatment Options: What Can You Do?
The good news? There are several treatment options available for people with NETs or carcinoid tumors—especially if caught early.
1. Surgery
For many patients, removing the tumor with surgery is the first step. It’s especially helpful when the tumor hasn’t spread.
2. Medication
Some drugs can help slow the tumor’s growth or manage symptoms caused by hormone release. These treatments might include:
- Somatostatin analogs (like octreotide): These help control hormone symptoms
- Targeted therapy: Focuses on the cancer cells while sparing healthy ones
- Chemotherapy: Often used for more aggressive or advanced tumors
3. Radiation Therapy
In cases where surgery isn’t possible, radiation might be used to shrink the tumor or ease symptoms.
4. Peptide Receptor Radionuclide Therapy (PRRT)
This newer approach delivers targeted radiation directly to cancer cells. It’s sort of like sending a guided missile instead of dropping a bomb.
Living With Neuroendocrine or Carcinoid Tumors: What to Expect
Finding out you have a tumor can be scary—but many people live long, full lives with treatment. In fact, because NETs tend to grow slowly, some people live with them for years without needing major intervention.
Staying on top of doctor visits, managing your symptoms, and getting regular scans is key. It’s also really important to talk to your healthcare provider about how you’re feeling—both physically and emotionally.
It’s okay to ask questions and advocate for yourself during this journey.
When Should You See a Doctor?
If you’ve been experiencing unexplained symptoms—like digestive issues, unusual flushing, or fatigue—it’s worth checking in with your doctor. While most of these symptoms can be caused by other things, it’s better to be safe.
Early detection can make a big difference when it comes to treatment options and outcomes.
Final Thoughts
Neuroendocrine and carcinoid tumors may be rare, but that doesn’t mean they should be ignored. Knowing the signs, understanding your treatment choices, and having open conversations with your healthcare team can empower you or a loved one to take control of your health.
Think of it this way: the more you know, the better prepared you’ll be.
And remember, if you or someone close to you is facing this diagnosis, you’re not alone. There are specialists, support groups, and communities out there ready to help.
Take that first step—it could make all the difference.
Stay informed. Stay strong. And most importantly, stay connected to your health.
