Overview
Neuroendocrine tumors (NETs) are a rare type of cancer that can develop in various parts of the body. They develop in the cells of the neuroendocrine system, which is responsible for producing hormones used to regulate various bodily functions. This informational material aims to provide an overview of different types of NETs, their causes, symptoms, diagnosis, treatment, and follow-up care.
There are 4 types of NETs:
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Pancreatic NETs
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Small Bowel NETs
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Appendiceal NETs
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Other NETs
Pancreatic NETs
What is it? Pancreatic neuroendocrine tumors (PanNETs) are tumors that develop in the hormone-producing cells of the pancreas. They are classified into two main types: functioning PanNETs, which produce hormones, and non-functioning PanNETs, which do not produce hormones.
Why does it happen? The exact cause of PanNETs is still not well understood. However, certain genetic syndromes, are known to increase the risk of developing these tumors.
Symptoms: Functioning PanNETs can cause symptoms related to the excess production of hormones, such as low blood sugar, stomach ulcers, and diarrhea. Non-functioning PanNETs often do not cause symptoms until they grow large enough to press on nearby organs, causing pain or discomfort in the abdomen.
Diagnosis: PanNETs can be diagnosed through blood tests, imaging tests (such as CT, MRI or PET scans), and biopsies. A biopsy involves removing a small sample of the tumor to examine it under a microscope and confirm the diagnosis.
Treatment: Treatment options for PanNETs depend on the size, location, and severity of the tumor. They may include surgery to remove the tumor, targeted therapy to block the growth of cancer cells, hormone therapy to suppress hormone production, or chemotherapy to kill cancer cells.
Follow-up: Regular follow-up appointments with your healthcare team will be necessary to monitor your condition and check for any signs of recurrence. This may involve periodic blood tests, imaging studies, and physical examinations.
Small Bowel NETs
What is it? Small bowel neuroendocrine tumours (SBNETs) are tumours that develop in the neuroendocrine cells of the small intestine. The most common type of SBNET is carcinoid tumour, which can produce hormones that cause various symptoms.
Why does it happen? The exact cause of SBNETs is unknown. However, certain genetic factors and syndromes, such as MEN1, may increase the risk of developing these tumours.
Symptoms: Symptoms of SBNETs can vary depending on the location and hormone production of the tumour. Common symptoms include abdominal pain, diarrhoea, flushing of the skin, and wheezing. In some cases, carcinoid syndrome may develop, causing symptoms such as flushing, diarrhoea, and heart palpitations.
Diagnosis: Diagnosis of SBNETs may involve blood and urine tests, imaging studies (such as CT or MRI scans), and endoscopic procedures, which use a thin tube with a camera to examine the inside of the small intestine. A biopsy may also be performed to confirm the diagnosis.
Treatment: Treatment options for SBNETs depend on the size, location, and severity of the tumor. They may include surgery to remove the tumor, targeted therapy to block the growth of cancer cells, hormone therapy to suppress hormone production, or chemotherapy to kill cancer cells. In some cases, medications may be prescribed to manage carcinoid syndrome symptoms.
Follow-up: Regular follow-up appointments with your healthcare team will be necessary to monitor your condition and check for any signs of recurrence. This may involve periodic blood tests, imaging studies, and physical examinations.
Appendiceal NETs
What is it? Appendiceal neuroendocrine tumors (ANETs) are rare tumors that develop in the neuroendocrine cells of the appendix, a small pouch-like structure connected to the large intestine.
Why does it happen? The exact cause of ANETs is unknown, and they are often discovered incidentally during an appendectomy for appendicitis.
Symptoms: Most ANETs do not cause any symptoms and are typically found during surgery for other reasons, such as appendicitis. In some cases, an ANET can cause abdominal pain or discomfort similar to that of appendicitis.
Diagnosis: ANETs are often diagnosed after an appendectomy when the removed appendix is examined under a microscope. If an ANET is suspected before surgery, imaging tests such as CT or MRI scans can help confirm the diagnosis.
Treatment: Surgery to remove the appendix (appendectomy) is the most common treatment for ANETs. If the tumor has spread to nearby lymph nodes or other organs, additional surgery, or treatments such as chemotherapy or targeted therapy may be necessary.
Follow-up: Regular follow-up appointments with your healthcare team will be necessary to monitor your condition and check for any signs of recurrence. This may involve periodic blood tests, imaging studies, and physical examinations.
Other NETs
What is it? Neuroendocrine tumours can also develop in other parts of the body, such as the lungs, stomach, colon, and rectum. These tumors are generally classified based on the primary location where they started.
Why does it happen? The exact cause of other NETs is still not well understood. However, certain genetic syndromes and factors may increase the risk of developing these tumors.
Symptoms: Symptoms of other NETs depend on the location and hormone production of the tumour. Some common symptoms may include abdominal pain, diarrhea, flushing of the skin, and wheezing.
Diagnosis: Diagnosis of other NETs may involve blood and urine tests, imaging studies (such as CT or MRI scans), and endoscopic procedures. A biopsy may also be performed to confirm the diagnosis.
Treatment: Treatment options for other NETs depend on the size, location, and severity of the tumour. They may include surgery to remove the tumor, targeted therapy to block the growth of cancer cells, hormone therapy to suppress hormone production, or chemotherapy to kill cancer cells.
Follow-up: Regular follow-up appointments with your healthcare team will be necessary to monitor your condition and check for any signs of recurrence. This may involve periodic blood tests, imaging studies, and physical examinations.
Conclusion: Neuroendocrine tumours are a diverse group of cancers that can develop in various parts of the body. Understanding the different types of NETs, their causes, symptoms, diagnosis, treatment, and follow-up care is essential for managing these rare tumours. Early detection and appropriate treatment can significantly improve outcomes for patients with NETs. If you or a loved one has been diagnosed with a neuroendocrine tumour, it is important to work closely with your healthcare team to develop an individualized treatment plan and ensure proper follow-up care. Educating yourself about NETs and maintaining open communication with your healthcare providers can help you feel more empowered and informed throughout your cancer journey.
Conclusion
As you navigate your neuroendocrine tumour journey, it is crucial to prioritise both your physical and emotional well-being. Here are some additional considerations to help you manage your condition:
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Emotional Support: Coping with a cancer diagnosis can be challenging, and it is essential to have a strong support system in place. Reach out to friends, family, or support groups to share your experiences and feelings. Consider seeking professional help from a therapist or counsellor if needed.
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Nutrition: Maintaining a balanced diet is crucial for overall health, especially for cancer patients. Work with a registered dietitian to develop a personalized nutrition plan that meets your specific needs and helps manage any side effects from treatments.
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Exercise: Engaging in regular physical activity can help manage stress, improve mood, and increase energy levels. Talk to your healthcare team about an appropriate exercise routine for your current health status.
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Complementary Therapies: Some patients find relief from symptoms or side effects through complementary therapies such as acupuncture, massage, or meditation. Discuss these options with your healthcare team to determine if they may be beneficial for you.
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Staying Informed: Stay up-to-date with the latest research and advancements in neuroendocrine tumor treatments. This will help you make informed decisions about your care and ensure you are aware of all available treatment options.
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Communication with Healthcare Providers: Establish an open and honest relationship with your healthcare team. Make sure to ask questions, discuss your concerns, and express your preferences regarding your treatment and care.
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Financial Assistance: Cancer treatments can be expensive, and financial stress can add to the emotional burden of a cancer diagnosis. Reach out to social workers, patient advocates, or non-profit organizations that specialize in financial assistance for cancer patients to explore available resources and support.