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Nearly 12,000 people in the United States are diagnosed each year with carcinoid tumors, which also are called neuroendocrine tumors. The number of people with carcinoid tumors has been increasing in recent years. This probably is because of the increase of endoscopy and CT scans to screen for or diagnose other issues.
This slow-growing type of cancer can start in any part of the body that has neuroendocrine cells. These cells receive signals from the nervous system and then release hormones into the blood. Carcinoid tumors are most common in the gastrointestinal (GI) tract and the lungs.
The average age of people diagnosed with carcinoid tumors is the early 60s. Carcinoid tumors are more common in African-Americans than in whites. They are slightly more common in women than men. A GI carcinoid tumor makes you more likely to have other digestive system cancers.
Carcinoid Tumor Risk Factors
Anything that increases your chance of getting a carcinoid tumor is a risk factor. These include:
- Conditions that affect how the stomach makes digestive juices, including atrophic gastritis, pernicious anemia or Zollinger-Ellison syndrome.
- Family history of a rare syndrome called multiple endocrine neoplasia 1 (MEN1)
- Race: African-Americans are more likely to develop carcinoid tumors in certain areas of the body than whites
- Gender: Carcinoid tumors are slightly more common in women
- Smoking tobacco
Not everyone with risk factors gets carcinoid tumors. However, if you have risk factors, you should discuss them with your doctor.
Learn more about carcinoid tumors:
Why choose MD Anderson for carcinoid tumor treatment?
MD Anderson’s Gastrointestinal Center gives you exemplary, customized carcinoid tumor care every step of the way. As one of the nation’s largest cancer centers, MD Anderson sees more patients with this complex type of cancer than most others, which translates into more successful outcomes for carcinoid tumors.
As one of the world’s largest cancer research centers, MD Anderson is leading the investigation into new methods of carcinoid tumor diagnosis and treatment. For instance, our researchers are studying carcinoid tumors on a molecular basis to try to find a cause.
Our status as a premier research center means we can offer clinical trials (research studies) of new treatments for carcinoid tumors. MD Anderson researchers have led the development of novel treatment strategies, including targeting of mTOR (a protein) and angiogenesis (growth of new blood vessels) in neuroendocrine tumors (including carcinoid tumors). MD Anderson researchers were involved from proof-of-concept single institution phase II to multi-national phase III studies.
BY Mary Powell
I labeled the daily emails from our March trip to MD Anderson for my brother’s stem cell transplant “our adventure,” and that’s exactly what it turned out to be.
I was excited to be a stem cell donor for my brother, Dan, who has leukemia. But when the doctors performed a chest x-ray, they discovered a questionable spot on my lung. We hoped it was nothing, but scheduled a CT scan to make sure.
The scan revealed a tumor on my lung. I cried to my sister as I told her something was wrong.
“We’ve been here for a week, and you are the first person we have seen cry,” she said to me, telling me to remain calm, be positive and toughen up.
“All these people knew they had cancer, and now I might have cancer,” I responded.
Neuroendocrine tumor diagnosed by chance
Eleven days after I arrived in Houston, I was told I had a carcinoid tumor in my lung. This is so not happening to me, I thought. I had to tell Dan I couldn’t be his donor.
My husband arrived the next day, and the next two weeks we did follow up scans and test to make sure the tumor hadn’t metastasized.
This trip did not turn out the way it was supposed to. Or did it?
Carcinoid tumors, also called neuroendocrine tumors, are rare and slow growing. Between 11,000 and 12,000 new cases are diagnosed each year.
From talking to other lungnoids -- yes, that is what we call ourselves -- I’ve learned that a lot of us were diagnosed by chance. Many other lungnoids told me they were misdiagnosed for years since many doctors are not familiar with this type of cancer.
My carcinoid tumor surgery
My tumor was low grade and small. I was referred to James C. Yao, M.D. The best carcinoid tumor treatment option for me was surgery, but I had time to make a decision on where to have it. Should I have the surgery back in Florida or someplace else? My husband and I talked about it and decided to have the surgery at MD Anderson.
My surgery went well, and my blood work was good. I didn’t have to do chemo or radiation, and the chance of this cancer coming back is very slim because it was caught so early.
A few months later my brother Dan had his transplant. The stem cells came from my oldest sister, Molly. Dan was on the 17th floor while I was on the seventh floor. Keeping things in the family took on a new meaning.
I went to MD Anderson to save my brother’s life, but in the end, he saved mine.