Neuroendocrine Tumors

Neuroendocrine tumors are a type of cancer that starts in special cells called neuroendocrine cells. These cells are a bit like nerve cells and cells that make hormones in the body.

These cancers are uncommon and can develop almost anywhere in the body. However, they're most often found in the lungs, appendix, small intestine, rectum, and pancreas.

There are different kinds of neuroendocrine tumors. Some grow slowly, while others grow quickly. Some tumors produce too much of certain hormones in the body (called "functional" tumors). Other tumors either don't make hormones at all, or don't make enough to cause noticeable problems ("nonfunctional" tumors).

Doctors determine the best way to treat neuroendocrine tumors based on several factors. This includes the type of tumor, where it's located, if it's producing extra hormones, how quickly it's growing, and whether it has spread to other parts of the body. The treatment plan will vary depending on these factors.

Neuroendocrine tumors are sometimes hard to notice at first. Whether or not you experience symptoms depends on where the tumor is located in your body and if it's making too many hormones.

Common signs of a neuroendocrine tumor can include:

• Pain: If the tumor is growing, it can cause pain.
• A noticeable lump: Sometimes you can feel a growing lump under your skin.
• Feeling very tired: This is a possible symptom.
• Unexpected weight loss: Losing weight without trying could be a sign.

Some neuroendocrine tumors release extra hormones (called "functional" tumors). These tumors can cause more specific symptoms, such as:

• Redness in the skin (flushing): Your skin might feel warm and look red.
• Loose bowel movements (diarrhea): This means you have more frequent and watery bowel movements.
• Frequent trips to the bathroom to urinate: This means you need to urinate more often than usual.
• Increased thirst: You might feel very thirsty.
• Feeling lightheaded or dizzy: This can happen due to the extra hormones.
• Shakiness or trembling: This can happen when your body has too many hormones.
• Skin rash: A skin rash is another possible symptom.

If you notice any of these symptoms that are bothering you and don't go away, it's important to see a doctor. Don't ignore these symptoms. Early diagnosis and treatment are key.

If you're experiencing any ongoing health issues that concern you, schedule a visit with your doctor.

Neuroendocrine tumors are a type of cancer, but exactly what causes them isn't fully understood. These cancers start in special cells called neuroendocrine cells. These cells have characteristics of both nerve cells and cells that make hormones. Neuroendocrine cells are found throughout the body.

Think of a cell's DNA like a set of instructions for how the cell should behave. In neuroendocrine tumors, the instructions in the cell's DNA get altered, or "mutated." These changes tell the cells to grow and multiply out of control. This uncontrolled growth forms a tumor.

Some neuroendocrine tumors grow very slowly, while others are more aggressive. Aggressive tumors can invade nearby healthy tissues, or they might spread to other parts of the body (metastasize). The speed at which a neuroendocrine tumor grows and spreads can vary greatly, depending on the specific mutation and the type of tumor.

Certain inherited conditions make some people more likely to develop neuroendocrine tumors. These are tumors that grow in the glands and tissues that produce hormones. These inherited conditions, called genetic syndromes, increase the overall risk of cancer in general.

Here are some examples of these genetic syndromes that can raise the risk of neuroendocrine tumors:

• Multiple Endocrine Neoplasia Type 1 (MEN 1): This syndrome makes people more prone to tumors in several glands that produce hormones, such as the parathyroid, pituitary, and adrenal glands. These tumors can cause various health problems.

• Multiple Endocrine Neoplasia Type 2 (MEN 2): Similar to MEN 1, this syndrome also increases the chance of tumors in hormone-producing glands, but it's more focused on the thyroid and adrenal glands. Different subtypes of MEN 2 have different levels of risk.

• Von Hippel-Lindau Disease (VHL): This syndrome increases the risk of tumors in several parts of the body, including the nervous system, blood vessels, and endocrine glands. These tumors can sometimes affect the ability of these organs to function normally.

• Tuberous Sclerosis: This condition often causes tumors in various organs, and can lead to problems in the brain, kidneys, heart, and lungs, amongst other places. Neuroendocrine tumors are just one potential part of this complex condition.

• Neurofibromatosis: This syndrome causes tumors to grow in the nerves throughout the body. While not always directly neuroendocrine tumors, some of these tumors can be located in hormone-producing areas, which could potentially contribute to the risk of neuroendocrine problems.

Essentially, if you have one of these inherited syndromes, you might have a higher chance of developing a neuroendocrine tumor compared to someone without that syndrome. It's important to talk to a doctor if you have concerns about your risk or if you have a family history of these conditions. Early detection and appropriate management are crucial.

Diagnosing a neuroendocrine tumor often involves several steps, tailored to the tumor's location in the body. Doctors use a variety of methods to pinpoint the problem.

Physical Exam: The doctor will physically examine you to look for signs and symptoms, such as swollen lymph nodes or indications that the tumor might be producing excess hormones.

Hormone Tests: Blood or urine tests may be done to check for excess hormones, which some neuroendocrine tumors can produce.

Imaging Tests: Pictures of the tumor are often created using imaging techniques like ultrasound, CT scans, and MRI scans. For neuroendocrine tumors, a special type of imaging called PET scans, using a radioactive substance injected into a vein, can be helpful.

Biopsy: To collect a sample of tumor cells for testing (a biopsy), doctors might use a thin, flexible tube with a light and camera at the end (like a bronchoscopy for the lungs, an endoscopy for the esophagus, or a colonoscopy for the rectum). In some cases, a surgical procedure is necessary to collect the tissue sample.

Further Testing: If there's a concern that the tumor has spread to other parts of the body, additional tests will be done to determine the extent of the cancer.

Mayo Clinic Care: Mayo Clinic experts can help you manage your neuroendocrine tumor. You can find information on how to request an appointment on their website. They also offer resources and information about cancer care and management.

Important Note: The information included below about Mayo Clinic's email newsletter signup is not relevant to the diagnosis and treatment of neuroendocrine tumors. It provides information on how to subscribe to a newsletter about coping with cancer and cancer-related news. This information was included in the original text but is not part of the core topic of diagnosing neuroendocrine tumors.