What Is Carcinoid Syndrome?
Carcinoid syndrome is a group of symptoms you might get if you already have a type of cancer called carcinoid tumors. It starts when the tumors release chemicals into your bloodstream. The symptoms can be similar to other illnesses, like asthma, irritable bowel syndrome, and menopause. You may have episodes when your skin suddenly gets red and warm, you have trouble breathing, or you have a rapid heartbeat, for example.
Carcinoid tumors usually grow in your stomach and intestines, but you can also get them in your lungs, pancreas, or rarely, testicles or ovaries. If you have carcinoid syndrome, it usually means that your cancer has spread to another area, most often your lungs or liver.
Although often there’s no cure for carcinoid tumors, treatments can help you live longer and better. (Sometimes it can be surgically removed and cured if found early.) You can also take steps to relieve the symptoms of carcinoid syndrome and feel more comfortable.
You have control over decisions about your treatment and your life. Find people you can talk to about your plans, your fears, and your feelings. Ask your doctor about support groups, where you can meet people who understand what you're going through.
You get carcinoid syndrome when your carcinoid tumors release hormones and proteins into your body. Where your tumors are will determine what substances they make.
When the tumors are in your digestive tract, a common place for them to grow, extra hormones usually go into a blood vessel that takes them to your liver, which makes them inactive. If your tumors have spread there, your liver won't be able to do its job of breaking down those hormones. Instead, they may start moving through your bloodstream to affect different parts of your body and cause symptoms.
You could get carcinoid syndrome from tumors in the lungs, testes, or ovaries. In those cases, the extra hormones go directly into your bloodstream.
People with carcinoid syndrome may have:
- Skin that turns a pink, red, or purple color
- Small, widened blood vessels on their face
- Shortness of breath or wheezing
- Rapid heart rate
- Sudden drops in blood pressure
Carcinoid syndrome can also cause complications. It's rare, but you could get heart disease. Your heart valves may get thick and leak. Medicine can help, and in some cases you might need surgery.
Carcinoid crisis isn't very common, but you might have a severe episode of blushing, breathing trouble, and confusion. This is an emergency that could be life-threatening, so get medical help right away.
Getting a Diagnosis
If your doctor thinks you have carcinoid syndrome, he'll do a physical exam and may ask you questions like:
- Have there been times when your skin suddenly got red and felt warm or burning?
- Do you often have diarrhea?
- Have you been short of breath?
- Do you sometimes wheeze?
You may also need tests to look for a carcinoid tumor.
Urine test. A lab will check the pee that you've collected in containers over a 24-hour period for high levels of hormones or what's left when your body breaks them down.
Blood test. This could show telltale substances that tumors release.
Imaging tests. A CT scan is a series of X-rays that makes detailed views of the inside of your body. An MRI uses strong magnets and radio waves to make pictures of your organs. For radionuclide scanning, your doctor will inject you with a small amount of radioactive material that the organs in your body absorb. A special camera can spot the material and make pictures that help your doctor find a tumor.
Questions for Your Doctor
- Where are the tumors that are causing my carcinoid syndrome?
- What kinds of tests will I need?
- What treatment do you recommend?
- Are there any foods I should avoid?
- What can I do to control my skin flushing?
- What other symptoms should I watch out for?
To treat carcinoid syndrome, your doctors will need to treat your tumors. You could need just one or a combination of treatments. Medication may help with your related symptoms.
Surgery. Doctors may take out an entire organ that has tumors, such as your appendix, or remove only part of an affected area, such as a section of your bowel.
Depending on where the tumor is, surgeons may also use an electric current to burn it off or do cryosurgery to freeze it. Another option could be radiofrequency ablation. Your surgeon will use an instrument that sends electrical energy into the tumor to kill cancer cells.
Chemotherapy. Strong medicines can often kill your cancer cells or slow their growth. Some of these drugs are taken by mouth and others are injected into a vein.
Radiation. This treatment can destroy cancer cells or keep them from multiplying. The radiation can come from a machine outside your body, or your doctor may place a small amount of radioactive material inside your body, in or near the tumor.
Biologic drugs. This type of treatment, which is also called immunotherapy, strengthens your body's defense system. Doctors inject drugs into your body that help your immune system kill cancer cells.
Drug therapy. Injected drugs such as lanreotide and octreotide can help with skin flushing. They may also have a small effect on stopping tumor growth. Diarrhea is a common side effect of carcinoid syndrome and taking telotristat ethyl (Xermelo) along with lanreotide or octreotide can often give relief.
Lanreotide and octreotide work by attaching to carcinoid cells and cutting down on the amount of chemicals they make. Their side effects can include nausea, gallstones, and pain or bruising where you inject it.
In some cases, doctors give octreotide with a low-dose injection of a man-made protein called alpha interferon to boost your body's response.
Taking Care of Yourself
You can make changes on your own to curb the effects of carcinoid syndrome. For instance, avoid certain foods and drinks that can trigger symptoms:
- Chili peppers
- Hot liquids
It might take some trial and error to see which are triggers for you.
Your intestines could have trouble absorbing nutrients, which can lead to weight loss, weakness, and other problems. Try to eat a healthy diet, and ask your doctor if you need to take vitamins or supplements.
What to Expect
Treatment might make the cancer that's causing your carcinoid syndrome go away. But the cancer may not be gone completely, or it could return. You may need regular therapy to keep it in check for as long as possible.
If your treatment stops working, you can focus on making sure you're as comfortable as possible. This is called palliative care.
You may not be able to control your cancer, but you get to say how you'll live your life.
You don't have to face things alone. Consider joining a support group, where you can you share your feelings with others who understand what it's like.
You can learn more about carcinoid syndrome and carcinoid tumors on the website of the Carcinoid Cancer Foundation. It also has information about how to join support groups in your area.