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About carcinoid syndrome

Complications

If left untreated, carcinoid syndrome can develop into more serious complications such as carcinoid heart disease and carcinoid crisis.1

Carcinoid heart disease

Carcinoid heart disease is the result of plaque or scar tissue building up on the heart valves and muscle. The cause of this buildup is unknown, but it is thought to be a result of excess substances such as hormones being released from GEP-NETs.1,2 

The main symptoms of carcinoid heart disease include:1,3

An infographic of the four main carcinoid symptoms. Tiredness (fatigue), weight loss, swelling (particularly in the ankles), and feeling breathless.

Once carcinoid heart disease develops, its symptoms and impact on your health can be managed with medical therapy and surgical treatment, if the heart valves are damaged.1,2

Carcinoid crisis

Carcinoid crisis is a severe form of carcinoid syndrome and is considered a medical emergency.1

Symptoms of carcinoid crisis include:1,4

  • Sudden blood pressure changes (this can make you feel sick, dizzy, faint, or weak)
  • Heart palpitations (irregular heartbeat, sensation of heart pounding, rapid heartbeat)
  • Flushing (redness and warmth of the face and sometimes the neck and upper chest)
  • Breathing difficulties
  • Severe diarrhoea

The causes of carcinoid crisis are not always clear, but are more common following a stressful procedure such as anaesthesia, surgery, or radiologic interventions, but it can also occur spontaneously with no obvious causes or triggers.1,4

If you have to undergo any of these procedures, your medical team may prescribe a somatostatin analogue such as octreotide. This is a drug that can help prevent and treat the symptoms of carcinoid crisis and carcinoid syndrome.5

If you are concerned about any symptom, including any not listed here, consult a medical professional. Any healthcare professional would rather know about your symptoms to rule out anything serious and ease your concerns than be unaware and overlook something serious; it's always better to find out what's causing them so you can receive appropriate treatment sooner.


References

  1. CRUK. Carcinoid Syndrome. Available at: https://www.cancerresearchuk.org/about-cancer/neuroendocrine-tumours-nets/about-carcinoid-syndrome. Last accessed April 2025.
  2. Ram P, Penalver JL, Lo KBU, Rangaswami J, Pressman GS. Carcinoid Heart Disease: Review of Current Knowledge. Tex Heart Inst J. 2019;46(1):21-27. Published 2019 Feb 1.
  3. Macmillan. Carcinoid syndrome. Available at: https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/carcinoid-syndrome. Last accessed April 2025.
  4. Rubin de Celis Ferrari AC, Glasberg J, Riechelmann RP. Carcinoid syndrome: update on the pathophysiology and treatment. Clinics (Sao Paulo). 2018;73(suppl 1):e490s. Published 2018 Aug 20.
  5. NETRF. Carcinoid Crisis. Available at: https://netrf.org/old-for-patients/living-with-nets/carcinoid-syndrome/carcinoid-crisis/. Last accessed April 2025.