Gut instincts seldom hint at life-changing news. One woman felt nonstop stomach pain, and doctors blamed anxiety. The real cause? A neuroendocrine tumor (NET). Her story shows how this rare, dangerous cancer hides in plain sight. In this post, we cover her case, explain NETs, reveal why doctors misread them, and list symptoms you must not ignore.
What Are Neuroendocrine Tumors (NETs)?
Neuroendocrine tumors (NETs) are rare growths that develop in cells that have both nerve and hormone-producing functions. These tumors can form anywhere in the body but are most common in the digestive system (like the stomach, intestines, or pancreas) and lungs. Some NETs grow slowly and show mild symptoms, while others are aggressive and spread quickly. Because they often produce hormones, they can cause a wide range of confusing symptoms, making them hard to detect early.
Why Are NETs Often Misdiagnosed?
The symptoms of neuroendocrine tumors can be vague and nonspecific, which leads many healthcare providers to initially misattribute them to more common conditions such as:
- Anxiety
- Acid reflux
- Irritable Bowel Syndrome (IBS)
- Menstrual cramps
- Food intolerance
This delay in diagnosis can sometimes span years, worsening the prognosis.
The Story: From Misdiagnosis to a Shocking Discovery
For months, the woman experienced chronic stomachaches, bloating, and fatigue. Doctors initially chalked it up to stress and anxiety—a common diagnosis, especially for women. Despite following their advice, the pain persisted and worsened. Eventually, further testing revealed the unexpected: she had a neuroendocrine tumor, a rare form of cancer arising from cells that produce hormones.
Her case is not isolated. Many people suffering from NETs face delayed diagnoses because the symptoms mimic more common conditions like IBS, ulcers, or anxiety disorders.
Are Neuroendocrine Tumors Cancerous? Understanding the Reality
The short answer is that neuroendocrine tumors are almost always cancerous. However, each case is unique, so we can’t explain the full complexity of this disease with a simple yes or no.
Doctors classify about 1% of neuroendocrine tumors based on how they look under a microscope, even though these rarely grow or spread, regardless of treatment. While rare, these cases are still worth mentioning.
In the past, pathologists used older classification systems and labeled neuroendocrine tumors as either “benign” (non-cancerous) or “malignant” (cancerous) based on the cells’ appearance. However, these labels didn’t always reflect how the tumors behaved—whether they would metastasize or remain stable—so the medical community moved away from that approach.
Today, we treat nearly all neuroendocrine tumors as malignant. Their behavior varies: some grow and spread quickly, while others stay slow-growing and contained. But we still consider all of them cancer.
Symptoms
Neuroendocrine tumors (NETs) often develop without noticeable symptoms in the early stages. When symptoms do appear, they can vary depending on the tumor’s location and whether it produces excess hormones.
Common signs and symptoms of NETs may include:
- Pain or discomfort caused by a growing tumor
- A noticeable lump under the skin
- Persistent fatigue or low energy
- Unexplained weight loss
If the tumor is functional (producing excess hormones), additional symptoms might include:
- Flushing or redness of the skin
- Diarrhea
- Frequent urination
- Increased thirst
- Dizziness or lightheadedness
- Shakiness
- Skin rashes
If you notice any of these symptoms, it’s important to consult a healthcare professional for proper evaluation and diagnosis.
What are the most common symptoms of neuroendocrine tumors?
Neuroendocrine tumor (NET) symptoms are generally classified into two main categories: hormonal and mechanical. Hormonal symptoms occur when the tumor produces excess hormones, which can lead to issues such as severe, persistent diarrhea; difficult-to-treat gastric ulcers; or poorly controlled blood sugar levels. The specific hormonal effects often depend on the tumor’s site of origin within the body.
Mechanical symptoms, on the other hand, are related to the tumor’s physical presence and growth. These symptoms arise when the tumor exerts pressure on nearby organs or tissues, potentially causing problems such as small bowel obstruction or localized pain. In such cases, the symptoms are due to the tumor physically interfering with the normal function of affected areas.
How are neuroendocrine tumors usually diagnosed?
Most patients with neuroendocrine tumors fall into one of two categories:
The first group seeks medical attention due to symptoms. These may include pain caused by metastatic cancer, most commonly in the liver. For example, a patient might visit a doctor with what seems like a gallbladder issue, only to discover it’s actually a neuroendocrine tumor in the liver. Others in this group may experience hormone-related symptoms that prompt further investigation and lead to the diagnosis.
The second group is diagnosed incidentally, with no prior symptoms. The tumor may be discovered during routine procedures like a colonoscopy or unexpectedly during imaging tests—such as an X-ray or CT scan—performed for unrelated issues, like a broken bone.
Managing Neuroendocrine Tumors: How Are They Treated?
We have more treatment options for neuroendocrine tumors than ever before, divided into two main types: local and systemic treatments.
Local treatments, like surgery, work best when the tumor is in one spot or when a single tumor is causing problems. Doctors may still consider surgery even if the cancer has spread. Interventional radiologists also use advanced techniques to target and control tumors—especially in the liver.
Systemic treatments target cancer throughout the body. These include chemotherapy, hormone therapy, and targeted therapies.
A newer option, peptide receptor radionuclide therapy (PRRT), uses a hormone to deliver radiation directly to tumors. Since most neuroendocrine tumors have hormone receptors, this method targets the cancer cells while sparing healthy tissue. The FDA approved PRRT in 2018, and studies show it can slow tumor growth by up to 80%.
There’s no single treatment path for neuroendocrine tumors. Doctors customize plans based on each patient’s condition and how the disease progresses.
Final Thoughts
The story of a woman whose neuroendocrine tumor was mistaken for anxiety is a powerful reminder: always listen to your body. When symptoms persist, don’t settle for vague explanations. Push for answers, ask for tests, and trust your instincts. Neuroendocrine tumors may be rare, but they’re real—and early diagnosis can make all the difference. Awareness is the first step toward better outcomes, not just for NET patients, but for anyone navigating unexplained health issues. Don’t ignore what your body is trying to tell you.
