What is Carcinoid?
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Carcinoid is a rare tumour that begins in cells in the neuroendocrine system. About 80% of carcinoid tumours grow in the appendix and small bowel. But they can also develop in the pancreas, lungs, stomach, ovaries, kidneys or testicles. Carcinoid tumours grow at different rates but they're usually very slow growing tumours. They may not grow or cause problems for months or years. However, some are aggressive and can quickly spread to other parts of the body and cause serious problems.
The cancer ribbon for Carcinoid and neuroendocrine cancer is a zebra print. It's so rare that many people don't even know it exists.
"One of the unpleasant symptoms of carcinoid tumours is flushing often called a carcinoid flush. A carcinoid flush is described differently from many sufferers and the intensity varies from person to person. The feeling described by many is a feeling of intense overheating and incredible itching. It can be accompanied by wheezing, heart palpitations and shortness of breath. In my experience, I have had episodes that lasted upwards of two hours. Even the white of my eyes appeared a reddish-purple."
~Cindy Jean Bohnert
A typical carcinoid flush in a patient with metastatic small bowel neuroendocrine tumours
What Is Carcidoid Syndrome?
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. Carcinoid tumors occur most commonly in the gastrointestinal tract or lungs.
Carcinoid syndrome typically occurs in people who have carcinoid tumors that are advanced. Treatment for carcinoid syndrome usually involves treating the cancer. However, because most carcinoid tumors don't cause carcinoid syndrome until they're advanced, a cure may not be possible. In those cases, medications may relieve your carcinoid syndrome symptoms and make you more comfortable.
Symptoms
The signs and symptoms of carcinoid syndrome depend on which chemicals the carcinoid tumor secretes into your bloodstream.
The most common signs and symptoms include:
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Skin flushing. The skin on your face and upper chest feels hot and changes color — ranging from pink to purple. Flushing episodes may last from a few minutes to a few hours or longer.
Flushing may happen for no obvious reason, though sometimes it can be triggered by stress, exercise or drinking alcohol.
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Facial skin lesions. Purplish areas of spiderlike veins may appear on your nose and upper lip.
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Diarrhea. Frequent, watery stools sometimes accompanied by abdominal cramps may occur in people who have carcinoid syndrome.
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Difficulty breathing. Asthma-like signs and symptoms, such as wheezing and shortness of breath, may occur at the same time you experience skin flushing.
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Rapid heartbeat. Periods of a fast heart rate could be a sign of carcinoid syndrome.
Resource: Mayo Clinic
Medical ID Alert for NET Patients
As NET patients are well aware, we tend to be quite complicated. It is a wise decision to wear a medical ID alert in the event that you need medical attention and are unable to speak for yourself.
If you have carcinoid (or any other kind of NET) with or without syndrome, it is recommended to wear a medical alert bracelet or necklace that states not receive epinephrine, which could precipitate a carcinoid crisis. Octreotide (Sandostatin) will control carcinoid crisis. Please note, if you have an anaphylactic reaction (eg. bees, nuts, latex, etc.), you cannot avoid the administration of epinephrine, just make sure octreotide is also available, which will help to stabilize carcinoid crisis precipitated by epinephrine.
Here is an example of what you can put on your ID:
Jane Doe
Carcinoid Syndrome
No epinephrine or NO EPI
Octreotide drip
There are a variety of companies that can provide you with medical ID alert jewelry and each allow variations as to how many letters per line, you may have to play around with what fits where and what makes sense with your conditions.
Here is a list of symptoms that I am familiar with for people with carcinoid colon cancer.
Symptoms can vary depending on size and location of tumour/tumours.
Why The Zebra?
Why the zebra for carcinoid and neuroendocrine cancer awareness? In medical school, students are told, “When you hear hoof beats, think horses, not zebras.” Physicians are taught to focus on the most likely possibilities when making a diagnosis, not the unusual ones. Sometimes physicians need to look for a zebra. In the rare disease community, the zebra can be carcinoid or a related neuroendocrine tumor (NET), such as a pancreatic NET.
What is carcinoid flushing?
Image by Janice Pasieka
Facial Flushing. Bright red flushing of the face, neck, or upper chest is one of the most common symptoms of carcinoid syndrome. Flushing occurs when excess serotonin or other chemicals in the blood cause blood vessels to dilate. ... Facial flushing is temporary and can last from a few minutes to several hours.
What Is Carcinoid Crisis?
Carcinoid crisis and pseudoanaphylactic reactions: Carcinoid crisis is when all of the symptoms of carcinoid syndrome come at the same time. Carcinoid crisis is the most serious and life-threatening complication of carcinoid syndrome, and is generally found in people who already have carcinoid syndrome.The crisis may occur suddenly, or it can be associated with stress, chemotherapy, or anesthesia. It is characterized by abrupt flushing of face and sometimes upper body, usually severe falls in blood pressure and even bronchospasm with wheezing can (infrequently) occur. The attack may look like an anaphylactic attack. Diarrhea is an important part of carcinoid syndrome but is not usually simultaneous with the carcinoid crisis. It more commonly occurs as part of the anaphylactic reaction of an allergic or pseudoallergic reaction. Standard allergy tests are not usually positive in such cases. 24-hour urine histamine, blood histamine and blood tryptase tests, particularly if obtained at time of attack or just afterwards will establish diagnosis. Of allergic or pseudo allergic so called idiopathic anaphylactic attacks and mast cell disease.Epinephrine will provoke – not help carcinoid attacks. Urine 5HIAA is helpful when positive but if depended on as the sole chemical test for carcinoid syndrome will miss 50% of cases! Better also to measure blood serotonin, tryptophan and chromogranin A. Other blood markers associated with rare cases of severe attacks of flushing, diarrhea and fall in blood pressure are VIP, calcitonin and gastrin. They too should be measured. If any or all of the above are positive, further elaborate tests and treatment will be needed with details depending on which test(s) are positive. A carcinoid crisis may be prevented and successfully treated with octreotide, a therapy that can increase low blood pressure and control the production of hormones.
Resource: The Carcinoid Cancer Foundation
Video
Video
Example of the front of a Medical Alert Card
* Chronic diarrhea along with constipation
* Flushing
* Sweating and night sweats
* Heartburn
* Wheezing/trouble breathing
* Rapid heartbeat with palpitations
* Dizziness/feeling faint/loss of balance
* Scaly rashes that will not go away(Pallegra), (caused by Niacine deficiency)
* Anemia(Iron deficiency)
* Blood in stool(depending on location of tumour
* Nausea/vomiting
* Arthritis
* Severe fatigue
* Unexplained weight loss or gain
* High blood pressure
* distended abdomen or puffy belly(even on a thin person)
* Cramping/bloating//gas
* Pain in abdomen(sometimes severe)
* Back pain
* Acromegaly
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