Overview
Carcinoid syndrome is a rare condition caused by a cancerous tumor, called a carcinoid tumor, which secretes certain chemicals into the bloodstream, leading to various signs and symptoms. Carcinoid tumors are typically found in the gastrointestinal tract or lungs, and they usually occur when the tumor is advanced. The symptoms of carcinoid syndrome depend on the specific chemicals secreted by the tumor, but common signs include skin flushing, diarrhea, difficulty breathing, and a rapid heartbeat. Treatment for carcinoid syndrome typically involves managing the underlying cancer, which may not be curable in advanced cases. Medications can help alleviate symptoms and improve quality of life for those affected by carcinoid syndrome.
Understanding the disease
Symptoms
Symptoms of carcinoid syndrome can vary depending on the specific chemicals secreted by the carcinoid tumor into the bloodstream. Common symptoms may include skin flushing, facial skin lesions, diarrhea, difficulty breathing, rapid heartbeat, and chest pain. These signs and symptoms typically occur in people with advanced carcinoid tumors, and treatment usually involves managing the symptoms to improve quality of life. If you experience persistent symptoms that bother you, it's essential to consult with your doctor for proper evaluation and management.
Risk Factors
Risk factors for developing carcinoid syndrome include older age, being female, and having a family history of multiple endocrine neoplasia, type 1 (MEN 1). Carcinoid tumors are more likely to occur in older adults and women, and having a genetic predisposition due to MEN 1 increases the risk of developing carcinoid tumors.
Development
Carcinoid syndrome occurs when a rare cancerous tumor called a carcinoid tumor secretes certain chemicals into your bloodstream, causing a variety of signs and symptoms. The most common signs and symptoms include flushing of the face and neck, diarrhea, and difficulty breathing. Carcinoid tumors occur most often in the gastrointestinal tract or the lungs. The tumors secrete serotonin or other chemicals into the bloodstream, and when they spread (metastasize) to the liver, they may secrete chemicals that aren't neutralized before reaching the bloodstream, causing carcinoid syndrome. The exact cause of carcinoid tumors is unknown, but they develop in neuroendocrine cells. Certain factors increase the risk of carcinoid tumors, including smoking, being older than 50, and having a family history of carcinoid tumors.
Assessment and Diagnosis
Triage
You should see a doctor if you experience any signs and symptoms of carcinoid syndrome, which include skin flushing, facial skin lesions, diarrhea, difficulty breathing, rapid heartbeat, chest pain, wheezing, shortness of breath, and abdominal pain. If these symptoms are persistent or bothersome, it's important to consult with your doctor to determine the cause and appropriate course of action.
Diagnosis
To diagnose carcinoid syndrome, your doctor will assess your signs and symptoms and may perform further tests, including:
- Urine test: Your urine may contain a substance made when your body breaks down serotonin, which could indicate that your body is processing extra serotonin released by carcinoid tumors.
- Blood test: Your blood may contain high levels of certain substances that are released by some carcinoid tumors. These tests can help confirm a diagnosis of carcinoid syndrome. Other diagnostic tests, such as imaging tests like CT scans, MRIs, or nuclear medicine scans, may also be used to locate the primary carcinoid tumor and determine if it has spread. A scope or camera that sees inside your body, such as an endoscopy or bronchoscopy, may be used to examine areas inside your body where carcinoid tumors may be present. It's important to discuss any questions or concerns you have with your doctor to ensure you receive the most appropriate diagnosis and treatment plan.
Management and Treatment
Complications
Potential complications of carcinoid syndrome include carcinoid heart disease, Cushing syndrome, and carcinoid crisis. Carcinoid heart disease can cause problems with heart valves and lead to heart failure. Cushing syndrome results from an excess of the hormone cortisol, which can cause various health issues. Carcinoid crisis is a severe episode that involves flushing, low blood pressure, confusion, and breathing difficulty. It can be life-threatening and may require urgent medical attention.
Home Remedies
It is important to consult a healthcare professional for proper diagnosis and treatment of carcinoid syndrome, as home remedies may not be effective or safe for managing this condition.
Treatment
To treat carcinoid syndrome, a combination of approaches may be used, depending on the specific case and the location of the tumor. Treatment typically involves addressing the cancer itself and managing the symptoms of carcinoid syndrome. Some possible treatment options include:
- Surgery: Removing the cancer or most of it may be an option, depending on the location and size of the tumor.
- Medications: Injections of medications such as octreotide (Sandostatin) and lanreotide (Somatuline Depot) can help control skin flushing, diarrhea, and other symptoms associated with carcinoid syndrome. Telotristat (Xermelo) can be used in combination with these drugs to further manage diarrhea.
- Hormone-blocking medications: Drugs like octreotide (Sandostatin, Bynfezia Pen) and lanreotide (Somatuline Depot) can be used to block hormones secreted by the tumor, reducing symptoms of carcinoid syndrome and slowing tumor growth.
- Chemotherapy: Chemotherapy may be recommended for advanced carcinoid tumors that cannot be removed with surgery. It can be delivered through an IV or as pills. It is essential to work closely with your healthcare team to determine the most appropriate treatment plan for your specific situation. Open communication with your doctor and participation in support groups can also help you better understand your condition and make informed decisions about your care.
Preparing for medical consultation
To prepare for an appointment for carcinoid syndrome, you should:
- Be aware of any pre-appointment restrictions: At the time you make the appointment, inquire about any necessary preparations, such as dietary considerations or fasting requirements.
- Write down symptoms: Make a list of any symptoms you are experiencing, including those that may seem unrelated to carcinoid syndrome.
- Keep a symptom diary: Track your symptoms and any changes you notice between appointments. This can help you provide your doctor with more detailed information.
- Bring a list of medications: Make a list of all prescription, over-the-counter, and herbal medications you are currently taking.
- Prepare a list of questions: Compile a list of questions to ask your doctor during your appointment. This may include questions about your diagnosis, treatment options, potential side effects, and any lifestyle changes you should make.
- Gather medical records: Request copies of any relevant medical tests, scans, or imaging studies to bring to your appointment.
- Consider seeing a specialist: Depending on your symptoms and diagnosis, your doctor may refer you to a specialist such as a gastroenterologist, pulmonologist, or oncologist. Be prepared to discuss the potential benefits and costs of seeing a specialist. By being well-prepared, you can make the most of your appointment time and ensure that you have a clear understanding of your condition and the available treatment options.