Monthly Archives: September 2014

Did you know? Carcinoid/NETs Cancer FACTS

  •  Over 90% of all Carcinoid/NETs patients are incorrectly diagnosed & treated for the wrong disease.
  • From initial onset of symptoms the average time to proper diagnosis exceeds five years. Most of the early symptoms are really non-specific and can be easily misdiagnosed which is why it is so difficult to properly diagnose it early.
  • More than 11,000 new cases of Carcinoid/NETs are diagnosed each year, which now means that NETs cancers are twice as common as pancreatic cancer.
  • It is considered a rare disease, and most physicians are often unaware of current diagnostic & treatment options. They hear over and over in med school. “If you hear hoof beats, think horses, not zebras.” They are taught it is generally more productive to look for a common rather than an exotic cause for disease. This isn’t ignorance as much as it is a lack of experience and exposure.
  • Many physicians still believe that carcinoid tumors are benign, slow growing and do not metastasize. Fact is when most are diagnosed their cancer has spread to distant parts of their body, and they are in fact stage 4 and incurable at that point….
  • Irritable Bowel Syndrome (IBS) and Crohns disease are two most common misdiagnosed conditions for patients with carcinoid
  • Abdominal pain, flushing, diarrhea, wheezing, bloating, heart palpitations, weakness, Heart valve lesions, cramping, telangiectasia, cyanosis, arthritis, pellagra, skin rash, heartburn and weight changes are the most prevalent carcinoid/NETs symptom’s
  • At least 110,000 people are living with carcinoid/NETs in the United States. I could not even venture a guess as to how many in the world.
  • Carcinoid/NETs Cancer is referred to as “The Good Looking Cancer” by the medical profession.

Most who suffer with this don’t look like what most think of when you say cancer patient. Traditional cancer therapies don’t work on this type of cancer. Most of us will not loose our hair (some do). Most of us look just like everyone else. Some of us will loose weight, some will gain and there will even be some who stay the same. You know that saying, you can’t judge a book by its cover. Same thing you can’t say a person is well or just by looking at them. We refer to ourselves as zebras, because of the rare nature of our disease and the saying that doctors are taught in medical school I mentioned earlier. “If you hear hoof beats, think horses, not zebras.” We are a heard of zebras. We may blend in, but we also stand out in our own unique way.21906stripesmakeusunique

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