If you’ve been diagnosed with carcinoid syndrome and a metastatic carcinoid tumor (MCT), you’re likely wondering how your life will change and how you can monitor and manage your condition. Read on to learn about lifestyle management tips and important monitoring and testing.
How is carcinoid syndrome managed?
Doctors manage carcinoid syndrome based on the symptoms you’re experiencing as well as how far the tumor has spread or metastasized in your body.
The difficulty with treating a carcinoid tumor is that it may not cause symptoms until it has spread. The tumor secretes several compounds, but these are usually emptied into your bloodstream where your liver processes them without ever causing symptoms.
However, when this type of tumor spreads — most commonly into the liver — the liver can’t break down the substances as well. As a result, carcinoid syndrome symptoms occur.
Many carcinoid tumors aren’t removable by the time of diagnosis. Sometimes a tumor can have such an irregular appearance or be so embedded in a person’s body that removing all of it safely wouldn’t be possible.
However, some people can have their tumor surgically removed, especially if it hasn’t spread. Depending on where the tumor is, surgical removal can usually reduce the symptoms associated with MCTs.
In instances when a person’s carcinoid syndrome symptoms don’t respond to medication, surgery may also be recommended. If a doctor can safely do so, they may remove a portion of the tumor, known as debulking the tumor. This can help to reduce symptoms, though it won’t remove all cancerous cells.
One of the most common medication treatments for MCTs is octreotide (Sandostatin). This medication can be delivered via injection or intravenously. It helps to slow or stop tumor growth. It also helps to stop the release of certain hormones from the pancreas that can cause carcinoid syndrome.
Another medication available for MCT treatment is lanreotide (Somatuline Depot), but it may not have the same growth-slowing properties as octreotide.
If these medications are ineffective, biological therapies may be another option. An example is interferon alfa, which stimulates the immune system in order to help slow the tumor’s growth.
While chemotherapy medications are a common treatment for many cancer types, carcinoid tumors are often less responsive to them.
Sometimes instead of removing the tumor, a doctor will recommend what is known as a hepatic artery embolization. This treatment involves injecting materials into the hepatic artery, which runs into the liver, to stop blood flow to the tumor. Without blood and nutrients, the tumor can’t continue to grow.
Hepatic artery embolization is a high-risk procedure that is usually performed at a larger medical center.
How often will I see my doctor?
Carcinoid tumors are often slow-growing, so your doctor will monitor you and your symptoms on a regular basis at first to determine how much the tumor may be growing. If the tumor can be removed, this can also affect how often you will follow up with your doctor.
After removing a tumor
If your tumor can be removed, your doctor will usually recommend following up in 3 to 12 months after your surgery. At this time, your doctor will ask you about any symptoms you may be experiencing as well as recommend imaging scans to identify if any of the tumor has returned.
Because MCTs secrete serotonin, too-high levels can help your doctor determine the status of your condition. So they’ll also order laboratory testing for substances they call tumor markers.
A common test is for 5-HIAA, which stands for 5-hydroxyindolacetic acid. The 5-HIAA compound, which your body makes when breaking down serotonin, is measured in a sample of your urine. It’s important to note that some foods are broken down into the same compound. These include nuts, bananas, and pineapples. As a result, you should avoid these foods if you’re going to have this type of test.
Another test is for CgA, or chromogranin A. This involves examining a blood sample. Higher-than-normal levels of CgA in the sample can indicate the presence of a tumor.
If you’ve been cancer-free for one to three years, you can expect to make regular visits to your doctor approximately every six months for tumor marker testing. Once you have been cancer-free for four years, these visits may be less frequent.
If your tumor can’t be surgically removed, your doctor may recommend visits every three to six months. At this time, you’ll likely have imaging scans to track the tumor’s progress, if any. Also, tumor marker testing such as the 5-HIAA and CgA tests will likely be performed.
In addition, your doctor may test you for other symptoms associated with carcinoid syndrome, such as a disorder of your heart valves. Your doctor may order an imaging scan known as an echocardiogram, which helps them evaluate how well your heart and its valves are working.
How can I live well with carcinoid syndrome?
Carcinoid tumors are incredibly rare tumors, and many people are unaware of the life-changing symptoms they can cause. In addition to the medical management side of life, it’s important that you can also live well with the disease.
One important step is avoiding things known to cause skin flushing, an uncomfortable symptom of carcinoid syndrome. These include:
- drinking alcohol
- eating large meals
- eating spicy foods
- not managing stress
- not getting enough sleep on a regular basis
Eating a healthy diet with fruits, vegetables, and whole grains can also help you get enough of the vitamins and minerals you need through your diet. If you experience chronic diarrhea, you may wish to take a daily multivitamin to supplement your diet.
In addition to these lifestyle measures, you might find help for managing your condition through support groups. The Carcinoid Cancer Foundation offers a list of online support and discussion groups specific to carcinoid cancer.