The New York Daily News published one of the best and longest articles on Carcinoid Tumors that I have seen in popular (not medical) media:

Daily Checkup: Carcinoid tumors have a variety of symptoms

This quote is interesting:

There are 11,000-15,000 new cases of carcinoid diagnosed every year in the U.S., and an estimated 115,000 Americans are currently living with the disease.

With the current U.S. population estimated at 317 million, that means:

• At most 0.005% of the population will be newly diagnosed this year (1 in 19,812)!
• Approximately 0.0363% of the population is living with the disease (1 in 2,757)!

By law in the U.S. a rare disease is any disease that affects less than 200,000 people in the U.S.  So we are rare by law.

What does this mean to those of us with the disease?  It means that much less money and time is dedicated to finding better treatments and detection methods and (god forbid) cures.  It also means that most oncologists and certainly most general practitioners have never seen a real case of the disease and many of them have incorrect ideas and information about the disease, if they know/remember anything at all.  My Kaiser doctors are against surgical removal of tumors even though the most expert doctors in the U.S.  have advocated surgery as the first treatment for several years. I had to fight for it.  I have been told by one oncologist that in the 60s, carcinoid was described during one day on rare diseases in his medical school.  All of this also tells us a major reason the disease takes so long to be diagnosed (the symptoms also match many more common diseases and doctors are trained to look for the common not the rare in diagnosing disease).

I recently met a woman who has had symptoms for 17 years.  She was diagnosed with carcinoid in the past few months.  Many carcinoids have few or no symptoms.  Unfortunately, the disease might then only be discovered by accident or an autopsy.  I had a very acid stomach for seven years and was told that was gerd or irritable bowel.  I used zantac and, after a bleeding ulcer, prilosec (last year this was proven to encourage tumor growth, another joke on ‘noids).  It turns out that a large carcinoid tumor in my liver was generating a lot gastrin which tells the stomach to make acid.  Like many ‘noids my metastasis tumors in liver were discovered by accident and the primary tumor has still not been located.

I am rambling, sorry… The major points here are:

• Read the article, it’s written for the public.
• If you suspect that you or someone you know has symptoms, get educated.  Use the websites in the article or my links in the right hand column.
• If a doctor tells you that you have carcinoid but that it is benign or that you should wait and observe with no treatment for a year or more, get a new doctor.  Carcinoid is never benign, it can be very slow.  Even if it is not growing it is generating endocrine fluid that will harm your body and over time kill you.
• Find a doctor who will listen and test you properly.  Each patient is different. Do not let a doctor tell you that her tests do not confirm so you do not have carcinoid.  No one test or scan can confirm or deny. Get second/third opinions.
• Go to an expert at least for opinion and recommendation.  This is perhaps the most important thing that you can do to save your life once you are diagnosed.  Make sure that your regular doctor will work with experts and follow recommendations.

May we all have the best possible outcomes,

Cy

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