A recent article highlighted the fact that November is carcinoid cancer month and is helping spread awareness about the disease in the hopes of earlier diagnosis.
Carcinoid syndrome is characterized by a group of symptoms and individual experiences related to the presence of a rare cancerous carcinoid tumor; the symptoms of this syndrome start because the carcinoid tumor releases chemicals into the blood stream. Carcinoid tumors are most common in the digestive tract or lining of the lungs. Other areas carcinoid tumors are found are in the pancreas, testicles and ovaries.
Carcinoid syndrome is difficult to diagnose because the symptoms are similar to those of other diseases such as irritable bowel syndrome and menopause. The symptoms of carcinoid syndrome include:
- Flushed, hot red skin, and at times the skin can even appear purple in color. This symptom is exacerbated by exercise, stress and alcohol consumption
- Frequent, watery stools with associated abdominal pain
- Shortness of breath and wheezing
- Night sweats
- Unexplained weight loss
Donna Bailey, the author of this article, shared her husband’s struggle to getting diagnosed with carcinoid cancer. For over twenty years, he remained undiagnosed. Doctors were puzzled, bouncing from diagnoses such as food allergies to liver cancer. It was not until Bailey herself and her friend did some digging of their own, that they found out about carcinoid cancer. Bailey approached her husband Lance’s doctors to ask for a carcinoid cancer detection test. It was then that Lance was diagnosed with advanced stage carcinoid cancer. Despite Lance fighting on with trials and experimental drugs, he sadly lost his fight to the cancer. Since then, Bailey has shared his story to spread awareness about carcinoid cancer in the hopes of saving others.
Every November is Carcinoid Cancer Awareness Month, and it is an opportunity for people to learn about the disease. Furthermore, November 10 is Neuroendocrine Tumor (NET) Day.
Carcinoid tumors belong to the family of growths known as neuroendocrine tumors. In 1954, the disease was named as carcinoid syndrome. The word “carcinoid” means tumors that are between aggressive tumors (carcinomas) and benign tumors (adenomas).
Carcinoid tumors grow very slowly over long periods of time, earning carcinoid cancer the nickname of “cancer in slow motion”. There is a medication that was developed in the 1990’s to treat these tumors, called Sandostatin. Approximately 1 in 100 people develop small and insignificant carcinoid tumors that typically cause no issues. More often, though, carcinoid tumors come from neuroendocrine cells in the small intestine, appendix, rectum, lungs, and pancreas where they will cause more issues. These significant carcinoid tumors are very rare, occurring in only about 100,000 people each year.
Awareness is Crucial
The key to early diagnosis, and thus survival, is spreading symptom awareness. Since so many of the symptoms are similar to other diseases (such as asthma, irritable bowel syndrome, gastritis, etc.), patients with carcinoid cancer are often misdiagnosed. In fact, nearly half of patients with NETs are misdiagnosed due to this mimicking of symptoms.
It is vitally important that patients tell their doctors immediately when experiencing these symptoms. Doctors can then make sure patients receive the appropriate carcinoid cancer testing, such as blood, urine, and X-ray tests, along with measuring hormone and chemical levels. Diagnosis can take five to seven years on average, which allows a lot of time for NET to spread throughout the body. Therefore, starting testing as soon as any symptoms appear is crucial for diagnosis, treatment, and survival.