If your doctor tells you that you've got a carcinoid tumor, there's a lot to take in. The condition is a type of cancer, but unlike some other kinds, there's more than one part of the body where it might start. And depending on where you get it, you could have a bunch of different symptoms, from pain in your belly to a bad cough.
All carcinoid tumors, wherever they show up, affect cells that make hormones. They're part of a group of diseases called neuroendocrine tumors (NETs).
Most carcinoid tumors start in one of two areas: your lungs or your digestive system, also known as the GI tract. That includes places like your stomach, small intestine, colon, appendix, or rectum.
It's not as common, but sometimes the tumors start in your pancreas, your testicles if you're a man, or ovaries if you're a woman.
Keep in mind that these tumors often grow slowly. And doctors often find them when they're at an early stage, which makes them easier to treat.
Learn as much as you can about this condition so you can work with your doctor to get a treatment that's best for you. And keep an open line to your friends and family so you can get the backup and support you need to tackle things with confidence and a positive attitude.
Risks for Carcinoid Tumors
Doctors don't know for sure why people get them. But a few things may put you at a higher risk.
Genetic disease. You may get carcinoid tumors if you have an illness called multiple endocrine neoplasia type 1 (MEN1). It's a disease that's passed down through your family. About 10% of these tumors are due to MEN1.
Another condition that can raise your risk for them is neurofibromatosis type 1.
Race. More African-Americans than whites get carcinoid tumors in the GI tract.
Gender. Women are slightly more likely than men to have this type of cancer.
Age. Most people are diagnosed with carcinoid tumors in their 40s or 50s.
Conditions. You're more likely to get a tumor in your stomach if you have a disease like pernicious anemia or Zollinger-Ellison syndrome, which changes the amount of acid your stomach makes.
When carcinoid tumors form on cells that make hormones, the tumors can start to make hormone-like substances of their own. This can cause a variety of symptoms, depending on where this is going on.
For instance, if you've got the tumors in your GI tract, you might notice things like this happening to you:
- Pain in your belly
- Feel nauseated or throw up
- Can't breathe right
- Get blood in your stool
- Lose weight
If you have a lung carcinoid tumor, you might get symptoms like a cough, and you sometimes might cough up some bloody mucus. You also might hear a whistling sound while you breathe, called wheezing.
When you have this type of cancer for many years, you might get a condition called carcinoid syndrome. It's a group of symptoms that start when the tumors release certain hormones into your bloodstream.
You might get redness and warmth in your face, or get sweaty. You might also get problems like:
- Feel short of breath or wheeze
- Heartbeat starts to speed up
- Weight loss
- Feel weak
- Hair starts to grow on your body and face
How Are Carcinoid Tumors Diagnosed?
A lot of times they're found by chance. Your doctor may spot them while they're doing an exam to look for other diseases.
If you go to your doctor because you have symptoms of a carcinoid tumor, they may do some of these tests to check if you've got them:
Biopsy. They remove some cells from your body, and a specialist looks at them under a microscope to check for cancer. The tumor may also be tested for certain genes or proteins to help fine-tune your treatment.
Blood and urine tests. Your doctor takes samples of both and tests them for hormones and other substances that carcinoid tumors release, such as serotonin or 5-HIAA.
Upper endoscopy. A thin, flexible tube called an endoscope can help your doctor see tumors in the esophagus, stomach, and small intestine. They put it through your mouth to get a view of your GI tract. You'll get medicine that keeps you from feeling pain or discomfort while they do this.
Colonoscopy. Your doctor inserts a thin, lighted tube through your behind to get a view of your rectum and colon. They may remove pieces of tissue to check for cancer under a microscope. Just like with an endoscopy, you'll get medicine to keep you pain-free.
Capsule endoscopy. For this test, you swallow a pill that has a tiny camera in it. This lets your doctor see all of the small intestine, where many carcinoid tumors begin.
CT, or computed tomography. This powerful X-ray makes detailed pictures inside your body. It can measure the size of your tumor. It can also see whether it has spread to your liver or lymph nodes, which are small glands that are part of your immune system, your body's defense against germs. You may get a special dye to drink, or take it in through a vein, to help show a clearer picture of the tumor.
MRI, or magnetic resonance imaging. It uses powerful magnets and radio waves to make pictures of organs and structures inside your body. An MRI can measure the size of the tumor. Just like with the CT scan, you may need to get a special dye to create a clearer image.
X-ray. It uses radiation in low doses to let your doctor view structures inside your body. It can look for a tumor in your lungs. Before this test, you may need to swallow a liquid containing a chemical called barium that makes the tumor easier for your doctor to see.
Radionuclide scanning. Before this test, you'll take in a small amount of a radioactive substance through one of your veins. This substance is attracted to carcinoid tumors. The test can show where in your body the tumor has spread.
Many people with carcinoid syndrome develop heart complications. Your doctor may suggest you see a heart doctor, called a cardiologist, or get heart study every 2-3 years to monitor your heart.
Your Treatment Options
Once your doctor knows what kind of carcinoid tumor you have and where in your body it is, you can start to make an action plan.
You may have surgery to remove all or part of the tumor. The type you get depends on where your cancer is located.
GI carcinoid tumors. The surgeon will make a cut in the skin and remove the tumor, along with some of the tissue around it. If the tumor is in the rectum, they may try a method that uses an electric current to heat and destroy it. This is called fulguration.
Some small carcinoid tumors of the stomach, duodenum, and rectum can be removed with an endoscope. For larger tumors, the doctor may also remove some of the stomach, colon, or rectum, along with nearby lymph nodes.
Lung carcinoid tumors. Your surgeon may remove the tumor and parts of the airway above and below it. This is called a sleeve resection. The airway is reconnected after the surgery. For a larger tumor, the surgeon may remove a piece of your lung or all of it. They may also take out some lymph nodes to stop the tumor from spreading.
Carcinoid tumors in the liver. If your cancer has spread there, your surgeon may remove the areas where the tumors are. This is called liver resection.
Before your operation, make sure your surgeon knows if you have carcinoid syndrome, because your tumor can release a dangerous amount of hormones during surgery. You'll get medicine beforehand to stop this from happening.
Your doctor might also try some other treatments along with surgery to make it work better. Or they might suggest them if you can't have surgery. Some of these choices are:
Radiation. It uses high-energy X-rays to kill cancer cells. Most of the time you get this from a machine outside your body. Or the doctor can implant radioactive seeds inside your body, near the tumor. Side effects can include fatigue and redness in the treated area. If you get radiation to the neck or throat, you may have a sore throat, cough, shortness of breath.
Chemotherapy. It uses drugs to stop cancer cells from growing. You might take these in the form of pills or get them put into you through a vein. Your doctor may use this treatment if your disease has spread. Side effects of chemo include nausea, vomiting, hair loss, loss of appetite, and a higher risk for infections.
Chemoembolization. It's a treatment used to treat a carcinoid tumor that has spread to the liver. Chemo drugs are delivered straight to the liver through a tube called a catheter that a doctor inserts into an artery. The drug stops blood flow to the tumor.
Hormone therapy. It stops the tumor from making extra hormones. The drugs octreotide and lanreotide treat GI carcinoid tumors. You get them through a shot.
Immunotherapy. It helps your body's immune system fight the cancer better. You may get a drug such as alpha-interferon.
Radioembolization. This is another treatment for liver cancer. Tiny radioactive beads are injected into your blood near your liver. They'll get stuck in the vessels around the tumor and give off radiation for several days, which can kill cancer cells.
Targeted therapy. It uses drugs that aim for genes, proteins, or other substances that are unique to your cancer and that help it grow. Some medications stop the growth of new blood vessels that help carcinoid tumors survive.
Talk to your doctor about the treatment plan that's best for you. And don't neglect your emotional needs while this is going on. Tap into your network of friends and relatives to get support as you take care of your health. See if you can join a support group near you where you can talk to people who know what it's like to go through treatment and recovery.