Carcinoid Tumors – A Rare Tumor Often Not Found On Time

Danger level: High

What is it?

Carcinoid tumor is a type of slow-growing cancer which can grow in several places in the body. It usually forms in the intestines, but can also appear in the lungs, in other places in the digestive system (such as the stomach) and in other organs.

Who gets it?

In the United States, about 1.5 people in 100,000 have a carcinoid tumor.

There are a few risk factors which can put you at risk of developing this tumor:

  1. Smoking – As in many other tumors, smoking can also increase your risk of having a carcinoid tumor.
  2. Family history – If you have someone in your family with a syndrome called Multiple Endocrine Neoplasia type 1 (or MEN1 for short) you might be at risk.
  3. Certain medical conditions – These conditions affect the stomach’s ability to produce acid, which is produced by the stomach under normal conditions. Conditions here include atrophic gastritis, pernicious anemia and Zollinger-Ellison syndrome. They all put you at greater risk for developing a carcinoid tumor.

What causes it?

Most of us know that our digestive system (the stomach, intestines, etc.) helps us break down the food we eat and digest it. One of the less known abilities of this system is to produce hormones (these are chemicals which affect cells in other parts of the body). Our digestive tract is lined by cells which can produce hormones (as well as other cells). Carcinoid tumors arise from these cells (and that is why carcinoid tumors can sometimes produce hormones themselves, as you’ll see ahead).

In carcinoid, these cells multiply uncontrollably to form masses, which are the tumor.


A part of the small intestine with a round mass in it – this is the carcinoid tumor.

How does it feel?

There are 3 things that can be felt in a carcinoid tumor:

  1. Nothing – Often these tumors don’t show any signs of existence in their early stages, and you can go about unaware you have them.
  2. Things that occur when there are tumors in the intestines – Carcinoid isn’t the only tumor which can occur in the intestines. It and other tumors there usually can cause a set of symptoms due to their location. These include abdominal pain, obstruction of the intestines (which will cause vomiting and bloating, among other things), diarrhea and weight loss.
  3. Things specific to carcinoid tumors – Above we mentioned that these tumors can produce

    hormones. In less than 10% of cases, this brings about a set of symptoms called the carcinoid syndrome. Things it can include:
    a. Flushing (redness) of the skin
    b. Diarrhea
    c. Enlargement of the liver
    d. Problems with the heart valves
    e. Asthma

How is it discovered?

There are a few ways in which these tumors can be discovered:

  1. Accidentally – Since a lot of the time these tumors don’t produce any symptoms, sometimes they’d be found in surgery done for other reasons.
  2. High levels of the hormones in the urine – As mentioned above, these tumors can produce chemicals. An example of this is 5-HIAA, which can be found in high levels in the urine. Blood tests can also be used to discover the tumor.
  3. Body imaging – Using a CT scan, an MRI or some other form of imaging, will show the tumor itself.

How is it treated?

The main treatment for carcinoid is surgery to take out the tumor. If the tumor is detected early, it can be removed completely in surgery (depending on where it’s at in the body). Unfortunately, most of these tumors are at an advanced stage when they are finally discovered, so removing them completely is usually not an option.

These tumors tend to spread (send metastases) to the liver. In which case, a simple removal of the tumor in the intestines isn’t enough.  A liver surgery, a liver transplant or a procedure which will stop the blood supply to the tumor in the liver is performed. Chemotherapy may also be used.

This video tells the story of Ruth Gerdes, whose carcinoid tumor reached the liver, and how she was cured of it:

For people with the carcinoid syndrome, there are certain medications, which can help greatly.

What happens after treatment?

If a tumor is taken out completely about 100% of people will continue living cancer-free. If the tumor spreads, the chances are lower for survival, but are still high relative to other cancers.

Even if the tumor isn’t operable, people can still live for years, since it grows slowly.

The bottom line – How do I avoid it?

Preventing the risk factors mentioned above (smoking, the medical conditions mentioned) might prevent you from having a carcinoid tumor.


For more information, you can visit the Caring for Carcinoid Foundation’s blog.