Imagine having a parasite that grows silently inside you, without causing any pain or discomfort. And then slowly makes you fall sick. But it’s hard to detect, diagnose, and treat. A parasite that can affect anyone, regardless of age, gender, or ethnicity.
This is not a fictional scenario, but a reality for many people who have carcinoid cancer, a rare type of neuroendocrine tumor that can arise from any part of the body. Carcinoid cancer is often overlooked, misunderstood, and misdiagnosed, leading to delays in treatment and poor outcomes. Carcinoid cancer is a hidden enemy within, and it needs to be exposed and defeated.
Know thy enemy
Carcinoid cancer is a rare type of cancer that arises from neuroendocrine cells, which are specialized cells that produce hormones and regulate various bodily functions. Carcinoid tumors can occur in any part of the body, but they are most commonly found in the gastrointestinal tract, lungs, appendix, and thymus gland. The average age of onset for carcinoid cancer is in the early 60s, about 60, or 55-65. However, carcinoid cancer can affect people of any age, and the age of onset may vary depending on the location and type of the tumor.
Carcinoid cancer is often slow-growing and may not cause any symptoms for years. However, some carcinoid tumors can secrete excess hormones, such as serotonin, histamine, and gastrin, that can cause a range of symptoms known as carcinoid syndrome. These symptoms may include:
- Flushing
- Diarrhea
- Wheezing
- Abdominal pain
- Heart problems
The exact cause of carcinoid cancer is unknown, but some risk factors may include:
- Age
- Family history
- Genetic syndromes
- Chronic inflammation
- Exposure to certain chemicals
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The most common genetic syndromes that cause carcinoid cancer are:
- Multiple endocrine neoplasia type 1 (MEN 1): This syndrome is caused by mutations in the MEN1 gene, which increases the risk of developing carcinoid tumors in the pancreas, stomach, duodenum, and lungs.
- Neurofibromatosis type 1 (NF1): This syndrome is caused by mutations in the NF1 gene, which increases the risk of developing carcinoid tumors in the small intestine.
- Von Hippel-Lindau syndrome (VHL): This syndrome is caused by mutations in the VHL gene, which increases the risk of developing carcinoid tumors in the pancreas.
- Tuberous sclerosis complex (TSC): This syndrome is caused by mutations in the TSC1 or TSC2 genes, which increases the risk of developing carcinoid tumors in the lungs.
These genetic syndromes are rare and account for only a small percentage of carcinoid tumors. Most carcinoid tumors are sporadic, meaning they occur without a known genetic cause.
Carcinoid cancer can be diagnosed by various tests, such as:
- Blood and urine tests
- Imaging tests
- Endoscopy
- Biopsy
- Molecular testing
The treatment of carcinoid cancer depends on the location, size, stage, and hormone production of the tumor, as well as the patient’s overall health and preferences. The main treatment options include:
- Surgery
- Radiation therapy
- Chemotherapy
- Targeted therapy
- Immunotherapy
- Hormone therapy
- Some newer treatments, such as peptide receptor radionuclide therapy (PRRT) and radioembolization, are also being studied in clinical trials
The prognosis of carcinoid cancer varies depending on the type, stage, and grade of the tumor, as well as the patient’s response to treatment. The survival rate of carcinoid cancer is generally higher than other types of cancer, but it can vary widely depending on the location and hormone production of the tumor. According to the American Cancer Society, the 5-year relative survival rate for patients with localized carcinoid tumors is 93%, for regional tumors is 76%, and for distant tumors is 35%.
Some of the organizations that are involved in Carcinoid Cancer care include the Carcinoid Cancer Foundation, the American Association for Cancer Research, the Neuroendocrine Tumor Research Foundation, and the NET Patient Foundation.
Carcinoid cancer is a rare and complex disease that can affect anyone at any age. By raising awareness and understanding of carcinoid cancer, we can help improve the diagnosis, treatment, and quality of life of those who have it, and ultimately, find a cure.
