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LEARN ABOUT CARCINOID CANCER & NETS

WHAT IS CARCINOID CANCER?

Carcinoid Cancer is the most common type of neuroendocrine cancers.  The typical Carcinoid tumor is slow-growing in comparison to other cancers; the less common variety, known as the atypical, is more a more aggressive, fast-growing disease.   Carcinoid cancer is not limited to a particular area of the body but originates in different areas and can spread to other parts of the body.   In addition to the physical presence of tumors, patients are also affected by excessive hormones produced by the tumors.  The symptoms of Carcinoid Cancer vary according to the location of the tumors, the type and amount of hormones the tumors produce, and if the cancer has spread.  Because the symptoms mimic other diseases, patients often experience symptoms for many years before a correct diagnosis is made.  Therefore, many patients at the time of diagnosis already have metastases (tumors that have spread from the primary tumor).  Some common symptoms include diarrhea, flushing, wheezing, and abdominal pain.  Common misdiagnoses include Irritable Bowel Syndrome, Crohn’s disease, menopause, rosacea, acid reflux and asthma.

 

WHAT ARE NETS?
NETs refers to neuroendocrine tumors.  Carcinoid is the most common type of neuroendocrine tumor.  The terms NET and Carcinoid Cancer are often used interchangeably.  The phrase “related NETs” is also used.  This refers to other types of NETs that are similar to Carcinoid Cancer in the way they behave and respond to treatment.

 

WHAT CAUSES CARCINOID CANCER?

The cause of Carcinoid Cancer remains unknown  but we do know that is originates from stem cells.   No environmental causes have been found and there are no studies to indicate that life style plays a role.  What is known is that while people most often are diagnosed in their 50’s and 60’s, it affects people of all ages, including children, and affects both men and women and people of all ethnic backgrounds.

 

IS THERE A CURE?

If Carcinoid Cancer is found early and the primary tumor is small, surgical removal of the tumor may achieve a complete cure.  Unfortunately, due to delays in diagnosis most patients already have metastases when the correct diagnosis is made.  There is currently no cure once the cancer has spread from the primary tumor and a patient’s life span may be reduced.   Nonetheless, with proper treatment and monitoring, many Carcinoid patients experience a high quality of life and live a long time with the disease.  With continuing improvements in treatment protocols and the advent of trials for new and promising pharmaceutical and interventional radiological therapies, for some patients, Carcinoid Cancer becomes a chronic condition.  For these patients the goal is to die WITH Carcinoid Cancer not FROM Carcinoid Cancer. 

 

HOW IS CARCINOID CANCER TREATED?

Consensus among international experts is that surgical removal is the first line of treatment of Carcinoid Cancer and related NET’s.   Once the cancer has spread from the primary site there are several options for patients.  Since currently there is no cure for metastatic Carcinoid Cancer, the goal of these treatments is to reduce the tumor load thereby reducing both the production of more harmful tumors, resulting in less symptoms of the disease.  Reducing tumor hormone production is important for patients because excessive hormone production can be very harmful and can even cause carcinoid heart disease.  Unlike some other cancers, it is critical to treat the metastatic disease even if the primary tumor is not found because the metastatic disease often is more life threatening than the primary tumor.   Many patients are treated with a combination of surgery, biotherapy, chemotherapy and interventional radiological procedures.  Monitoring the disease on a prescribed schedule is a critical part of disease management since scans and/or blood and urine markers are used to indicate changes in the disease.  

 

HOW RARE IS CARCINOID CANCER?

Carcinoid Cancer is considered to be a rare cancer and is sometimes referred to as an orphan disease.  However, with the improvements in diagnosis Carcinoid Cancer rates are on the rise and some speculate that its status as an orphan disease will soon end.   In recent years more than 11,000 new cases of Carcinoid have been diagnosed annually.   At least 110,000 people in the United States have been diagnosed and are living with Carcinoid/NETs. 

 

WHY ARE THERE MISDIAGNOSES AND DELAYS IN DIAGNOSIS?
Several factors contribute to delays and misdiagnosis.  One of the factors is the nature of the disease and the fact that most Carcinoid Cancer symptoms can be similar to the symptoms of many common diseases.   In addition to the inherent challenges of the disease, Carcinoid was considered to be rare, so in the past medical schools gave little attention to teaching about Carcinoid Cancer.  As a result many doctors have very limited knowledge about how to diagnose and treat Carcinoid Cancer.  Fortunately, there have been great advances in the past 10 years alone that have significantly impacted the diagnosis and treatment of the disease but we are still challenged with the task of disseminating that new body of knowledge to the medical community at large.  Sadly, there are physicians today who still believe that carcinoid is benign and that it require neither treatment nor follow-up, leading to unnecessary suffering and premature death.   

 

DISCLAIMER
This was written by a non-medical professional to provide a general overview for patients of Carcinoid Cancer and related Neuroendocrine Tumors.  It represents current thought on Carcinoid Cancer in general terms and is not intended to take the place of advice from medical professionals.  Because patients vary greatly decisions about treatment and management of Carcinoid Cancer should be made based on consultation with a team of carcinoid-knowledgeable physicians. 

Pennsylvania Carcinoid Cancer Advocacy Network