When you have neuroendocrine tumors (NETs), you can get a lot of different symptoms, from shortness of breath to headaches to cramps in your belly. Why the variety? It's all about location. Your tumors can show up in lots of places, and where they're growing makes a big difference to how you feel.
The trouble with finding NETs is they often don't cause symptoms at first. "Because some of these tumors can be so slow growing, they may actually not cause problems for a long time," says Emily Chan, MD, PhD, medical oncologist at the Vanderbilt-Ingram Cancer Center. "If something grows slowly, the other tissues and cells around it have time to accommodate it."
Even if you do feel like something's not right, you might not connect it with NETs. "The symptoms can be vague," says Thomas O'Dorisio, MD, director of neuroendocrine tumor clinics at the University of Iowa. "So [the tumor is] often missed for a long time."
Ellen Reed, who lives in Alberta, Canada, learned this lesson firsthand. In 1996, she began to have diarrhea and her face got flushed. She thought her symptoms were due to the stress of caring for her mother, who'd had a stroke. She figured she'd feel better once her tension eased up. "My symptoms didn't go away," she says.
Reed didn't even consider it might be a NET until her brother, who'd been diagnosed with a type called a carcinoid tumor, said her symptoms sounded like his own. "He told me, 'Ellen, it's like reliving what I went through.'"
Types of NETs
These tumors affect a type of cell called a neuroendocrine cell. NETs can form anywhere in your body where you have those, and they're often named based on where they grow.
Carcinoid tumors are a type of NET that grows in the:
- Digestive system: stomach, small intestine, colon, or rectum
- Ovaries or testicles (rarely)
You may hear your doctor refer to carcinoid tumors as "well-differentiated." That's just a technical way of saying they look similar to normal cells under a microscope. They often grow slowly.
Pancreatic NETs start in the islet cells of the pancreas, a gland in your belly. Your doctor may say your tumors are "functional" or "nonfunctional."
Functional tumors make their own hormones that cause symptoms. Hormones are chemicals that control different actions in your body, like your digestion, blood sugar levels, and heart function.
Nonfunctional tumors don't cause symptoms, but they can grow and spread from their original spot to other places in your body.
There are a few kinds of functional pancreatic NETs, which are named after the hormone they release. For example, insulinomas make too much insulin, which lowers levels of your blood sugar. Glucagonomas make too much glucagon, which raises blood sugar. Gastrinomas make gastrin, which helps digest food. Some pancreatic NETs are cancer and others are not.
Medullary carcinoma starts in thyroid gland cells that make calcitonin, a hormone that controls calcium levels in your body. This type of NET often runs in families, and it can spread quickly.
Pheochromocytoma is a rare tumor that forms in the adrenal glands, which sit above your kidneys. It makes the hormones adrenaline and noradrenaline, which control heart rate, blood pressure, and blood sugar. Most pheochromocytomas are not cancer. But the tumor can release hormones that cause heart problems such as a heart attack or stroke.
Merkel cell carcinoma is a rare type of skin cancer. It often starts in parts of the skin that often get a lot of sunlight, such as your head, neck, arms, and legs. It's more likely to spread than other types of skin cancer.
Common NET Symptoms
Which symptoms you have with a neuroendocrine tumor depends on where the disease is, whether it makes hormones, and if so, which ones.
A carcinoid tumor in the digestive system will cause symptoms like:
- Diarrhea and cramps
- Nausea and vomiting
- Weight loss
When a cancerous NET is in the lung, you might have:
- A cough
- Shortness of breath
- Whistling when you breathe, called wheezing
- Chest pain
A pancreatic NET that makes hormones can cause symptoms like:
- Dizziness, weakness, and fast heartbeat
- Headaches, a frequent need to pee, hunger, thirst, and weight loss
- Heartburn, pain in your belly, and diarrhea
Even NETs that don't make hormones can cause symptoms by blocking the organ where they grow. You might get a lump or have problems like:
If you've had symptoms like these, see a doctor who's experienced in treating NETs, Chan says. "Folks who see something a lot can tell subtle differences more than people who see it once a year."
It took close to 3 years for Reed to get diagnosed with a carcinoid tumor and find the treatment she needed. Living with this cancer for a long time has made her "a specialist." "You have to take charge of the disease," she says.