Small Bowel Neuroendocrine Tumours

Small bowel neuroendocrine tumours (NETs) are rare tumours that develop in the small bowel, which is a long, hollow tube that carries the food from the stomach to the large bowel. It is made up of three separate sections: the duodenum, jejunum, and ileum.

Neuroendocrine cancers are a complex group of tumours that develop in the neuroendocrine system, which is responsible for regulating important bodily functions such as heart rate, blood pressure and metabolism. They most commonly develop in the gastro-intestinal tract, pancreas, and the lungs; however, they can develop anywhere in the body. These tumours develop from neuroendocrine cells, which are responsible for receiving signals from the nervous system and producing hormones and peptides (small proteins) in response.

Small bowel NETs are slightly more common in men, and tend to be diagnosed in people over the age of 50. However, anyone can develop the disease.

Types of Small Bowel Neuroendocrine Tumours

There are two primary types of small bowel NETs, which are categorised by their location within the small bowel.

Duodenal NETs

Duodenal NETs are found in the duodenum, the first portion of the small bowel. They are rarer than other types of small bowel NETs, and can produce high levels of hormones such as serotonin, calcitonin, gastrin, and somatostatin, depending on the type of tumour you have. While they can be aggressive, they can have a good prognosis.

Ileum and Jejunum NETs

NETs of the ileum and jejunum are more common than duodenal NETs, are often grouped together and are generally difficult to diagnose. They may be slow-growing, asymptomatic, and small, and are often diagnosed at a later stage of disease. While these NETs can metastasise, they can have a good prognosis.

Treatment

If a small bowel NET is detected, it will be staged and graded based on size, metastasis, and how the cancer cells look under the microscope. Staging and grading helps your doctors determine the best treatment for you.

Cancers can be staged using the TNM staging system:

  • T (tumour) indicates the size and depth of the tumour.
  • N (node) indicates whether the cancer has spread to nearby lymph nodes.
  • M (metastasis) indicates whether the cancer has spread to other parts of the body.

This system can also be used in combination with a numerical value, from stage 0-IV:

  • Stage 0: this stage describes cancer cells in the place of origin (or ‘in situ’) that have not spread to nearby tissue.
  • Stage I: cancer cells have begun to spread to nearby tissue. It is not deeply embedded into nearby tissue and had not spread to lymph nodes. This stage is also known as early-stage cancer.
  • Stage II: cancer cells have grown deeper into nearby tissue. Lymph nodes may or may not be affected. This is also known as localised cancer.
  • Stage III: the cancer has become larger and has grown deeper into nearby tissue. Lymph nodes are generally affected at this stage. This is also known as localised cancer.
  • Stage IV: the cancer has spread to other tissues and organs in the body. This is also known as advanced or metastatic cancer.

Cancers can also be graded based on the rate of growth and how likely they are to spread:

  • Grade I: cancer cells present as slightly abnormal and are usually slow growing. This is also known as a low-grade tumour.
  • Grade II: cancer cells present as abnormal and grow faster than grade-I tumours. This is also known as an intermediate-grade tumour.
  • Grade III: cancer cells present as very abnormal and grow quickly. This is also known as a high-grade tumour.

Once your tumour has been staged and graded, your doctor may recommend genetic testing, which analyses your tumour DNA and can help determine which treatment has the greatest chance of success. This is often performed after a biopsy, and can help guide treatment options for you.

Treatment is dependent on several factors, including location, stage of disease and overall health.

Treatment options for small bowel NETs may include:

  • Surgery, potentially including:
    • Endoscopic mucosal resection.
    • Resection of a portion of the small bowel.
    • Right hemicolectomy.
    • Lymphadenectomy.
  • Somatostatin analogues (SSAs).
  • Chemotherapy.
  • Radiation therapy, potentially including peptide receptor radionuclide therapy (PRRT).
  • Targeted therapy.
  • Clinical trials.
  • Palliative care.

Risk factors

Because of how rare small bowel NETs are, there has been limited research done into the risk factors of this disease.

Symptoms

Some people with small bowel NETs will appear asymptomatic in the early stages of disease. As the tumour progresses, some of the following symptoms may appear:

  • Abdominal pain and/or discomfort.
  • Unexplained weight loss.
  • Changes in bowel habits, potentially including:
    • Diarrhoea.
    • Rectal bleeding/blood in stool.
    • Darker coloured stools, often black.
  • Nausea and/or vomiting.
  • Fatigue.
  • Carcinoid syndrome (rare), which carries its own set of symptoms:
    • Facial flushing (usually red or purple in the face, neck, and/or upper chest).
    • Diarrhoea.
    • Wheezing.
    • Abdominal pain.
    • Carcinoid heart disease (plaques on the heart muscle caused by excess hormone production).
    • Fatigue.
    • Skin changes, such as red or purple spots on the face, neck, and/or upper chest.
  • Bowel obstruction.
  • Anaemia.

Not everyone with the symptoms above will have cancer, but see your general practitioner (GP) if you are concerned.

Diagnosis

If your doctor suspects you have a small bowel NET, they may order the following tests to confirm the diagnosis and refer you to a specialist for treatment:

  • Physical examination.
  • Imaging tests, potentially including:
    • MRI (magnetic resonance imaging).
    • CT (computed tomography) scan.
    • PET (positron emission tomography) scan.
    • Ultrasound.
    • MIBG scan.
  • Blood tests.
  • Urine tests.
  • Endoscopy.
  • Biopsy.

References

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