There is no such thing as routine neuroendocrine cancer. Every patient’s neuroendocrine cancer is different, with different, individually unique genes and molecules driving each person’s specific cancer.

At the OSUCCC – James, our neuroendocrine cancer specialists are world-renowned cancer experts who focus solely on neuroendocrine cancer and who reach across medical disciplines (oncologists, surgeons, radiologists, pharmacists, endocrinologists, and more) to design the very best treatment plan and therapies to target each patient’s specific cancer.

And by offering access to the country’s most advanced clinical trials right here at the OSUCCC – James, patients know that additional options, when needed, are often available for their treatment and care.

Facts About Neuroendocrine Cancer

Neuroendocrine cells are spread throughout the body and release hormones into the blood in response to a signal from the central nervous system, or the body’s brain and nerves. When a tumor develops in the cells, it affects how the cells behave and how well they release or maintain hormones.

Neuroendocrine cancers are rare tumors. They typically account for a small percentage of all the cancers in the organ in which they are diagnosed. For example, of all cancers diagnosed in the pancreas, pancreatic neuroendocrine cancers make up less than 5 percent.

(Source: National Cancer Institute)

Types of Neuroendocrine Cancer

Carcinoid Tumor

This type of neuroendocrine cancer is very rare, occurring most often in the gastrointestinal, or GI, system. The GI system is part of the body’s digestive system that includes the stomach, small intestine, colon, rectum and appendix. GI neuroendocrine cells make hormones that help control digestion.

Carcinoid tumors also can be found in the lungs.

Pancreatic Neuroendocrine Tumor

The pancreas is a gland behind the stomach. Neuroendocrine cells in the pancreas affect production of hormones such as insulin, which controls blood sugar. Pancreatic neuroendocrine tumors also are called islet cell tumors.

Medullary Thyroid Cancer

Medullary thyroid cancer is a rapidly growing but still rare cancer that occurs in neuroendocrine cells in the thyroid gland. The thyroid gland is at the base of the throat. The cells, called C cells, help make a hormone called calcitonin that controls calcium levels in the blood.

Pheochromocytoma

A pheochromocytoma is a rare neuroendocrine tumor that forms in the center of the adrenal glands. An adrenal gland is located above each kidney and makes hormones called catecholamines that help control heart rate.

Merkel Cell Carcinoma

This aggressive neuroendocrine tumor arises in Merkel cells, which are located in the top layer of the skin near nerve endings that receive touch sensations. Merkel cell carcinoma also is called neuroendocrine cancer of the skin. It occurs most often in areas of skin exposed to sun.

Neuroendocrine Tumor, Non-small Cell Lung

This type of rapidly growing cancer occurs in neuroendocrine cells in the lungs.

Neuroendocrine Tumor, Small Cell Lung

Several types of neuroendocrine cancers are classified with small-cell lung cancers, but arise in neuroendocrine cells. They are:

  • Low-grade typical carcinoid
  • Intermediate-grade atypical carcinoid
  • High-grade neuroendocrine tumors including large-cell neuroendocrine carcinoma and small-cell lung cancer

(Source: National Cancer Institute)

Neuroendocrine Cancer Symptoms

Neuroendocrine tumors affect production of hormones, usually causing higher amounts of the hormones in the blood than normal. Symptoms are related to the high hormone levels but may vary depending on the type of neuroendocrine cancer and the type of cells affected.

Carcinoid Tumor

Some gastrointestinal carcinoid tumors have no signs or symptoms in the early stages.

Signs and symptoms may be caused by the growth of the tumor and the hormones the tumor produces. Some tumors, especially tumors of the stomach or appendix, may not cause signs or symptoms. Carcinoid tumors are often found during tests or treatments for other conditions.

Carcinoid tumors in the small intestine (duodenum, jejunum and ileum), colon and rectum sometimes cause signs or symptoms as they grow or because of the hormones they make. Other conditions may cause the same signs or symptoms.

Check with your doctor if you have any of the following:

Duodenum

Signs and symptoms of GI carcinoid tumors in the duodenum (first part of the small intestine, that connects to the stomach) may include the following:

  • Abdominal pain
  • Constipation
  • Diarrhea
  • Change in stool color
  • Nausea
  • Vomiting
  • Jaundice (yellowing of the skin and whites of the eyes)
  • Heartburn

Jejunum & Ileum

Signs and symptoms of GI carcinoid tumors in the jejunum (middle part of the small intestine) and ileum (last part of the small intestine, that connects to the colon) may include the following:

  • Abdominal pain
  • Weight loss for no known reason
  • Feeling very tired
  • Feeling bloated
  • Diarrhea
  • Nausea
  • Vomiting

Colon

Signs and symptoms of GI carcinoid tumors in the colon may include the following:

  • Abdominal pain
  • Weight loss for no known reason

Rectum

Signs and symptoms of GI carcinoid tumors in the rectum may include the following:

  • Blood in the stool
  • Pain in the rectum
  • Constipation

Carcinoid syndrome may occur if the tumor spreads to the liver or other parts of the body.

The hormones made by gastrointestinal carcinoid tumors are usually destroyed by liver enzymes in the blood. If the tumor has spread to the liver and the liver enzymes cannot destroy the extra hormones made by the tumor, high amounts of these hormones may remain in the body and cause carcinoid syndrome. This can also happen if tumor cells enter the blood.

Signs and symptoms of carcinoid syndrome include the following:

  • Redness or a feeling of warmth in the face and neck
  • Abdominal pain
  • Feeling bloated
  • Diarrhea
  • Wheezing or other trouble breathing
  • Fast heartbeat

Talk to your doctor if you have any of these, as they may be caused by gastrointestinal carcinoid tumors or by other conditions.

Pancreatic Neuroendocrine Tumor

Different types of pancreatic neuroendocrine tumors (NETs) have different signs and symptoms.

Symptoms may be caused by the growth of the tumor and by hormones the tumor makes. Some tumors may not cause symptoms. Conditions other than pancreatic NETs can cause the symptoms listed below.

Check with your doctor if you have any of these symptoms.

Signs & Symptoms of a Nonfunctional Pancreatic NET

A nonfunctional pancreatic NET may grow for a long time without causing symptoms. It may grow large or spread to other parts of the body before it causes symptoms, such as:

  • Diarrhea
  • Indigestion
  • A lump in the abdomen
  • Pain in the abdomen or back
  • Yellowing of the skin and whites of the eyes

Signs & Symptoms of a Functional Pancreatic NET

The symptoms of a functional pancreatic NET depend on the type of hormone being made.

Too much gastrin may cause:

  • Stomach ulcers that keep coming back
  • Pain in the abdomen, which may spread to the back (and may come and go, or go away after taking an antacid)
  • The flow of stomach contents back into the esophagus (gastroesophageal)
  • Diarrhea

Too much insulin may cause:

  • Low blood sugar; this can cause blurred vision, headache and feeling lightheaded, tired, weak, shaky, nervous, irritable, sweaty, confused or hungry
  • Fast heartbeat

Too much glucagon may cause:

  • Skin rash on the face, stomach or legs
  • High blood sugar, which may cause headaches, frequent urination, dry skin and mouth or feeling hungry, thirsty, tired or weak
  • Blood clots, which if formed in the lungs can cause shortness of breath, cough or pain in the chest; if formed in the arm or leg, clots can cause pain, swelling, warmth or redness of the arm or leg
  • Diarrhea
  • Weight loss for no known reason
  • Sore tongue or sores at the corners of the mouth

Too much vasoactive intestinal peptide (VIP) may cause:

  • Very large amounts of watery diarrhea
  • Dehydration. This can cause feeling thirsty, making less urine, dry skin and mouth, headaches, dizziness or feeling tired
  • Low potassium level in the blood. This can cause muscle weakness, aching or cramps, numbness and tingling, frequent urination, fast heartbeat and feeling confused or thirsty
  • Cramps or pain in the abdomen
  • Weight loss for no known reason

Too much somatostatin may cause:

  • High blood sugar, which may cause headaches, frequent urination, dry skin and mouth or feeling hungry, thirsty, tired or weak
  • Diarrhea
  • Steatorrhea
  • Gallstones
  • Yellowing of the skin and whites of the eye
  • Weight loss for no known reason

(Source: National Cancer Institute)

Having these symptoms does not necessarily mean you have neuroendocrine cancer. But if you have symptoms, you should tell your doctor, especially if symptoms have continued for longer than a few weeks.

 

If you have received a neuroendocrine cancer diagnosis, or if you want a second opinion or just want to speak to a neuroendocrine cancer specialist, we are here to help you. Call 800-293-5066 or 614-293-5066 to make an appointment.

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Patient Story

Patient Stories Harry Cashy

Harry Cashy

When business owner Harry Cashy found out he had neuroendocrine cancer, some doctors gave him only two years to live. Then experts at the OSUCCC – James started guiding his care.

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The James Cancer Hospital and Solove Research Institute

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Columbus, Ohio 43210

800-293-5066 or 614-293-5066

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