Good Carcinoid Article in Popular Press!

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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Good Carcinoid Article in Popular Press! was last modified: May 8th, 2014 by cy

6 thoughts on “Good Carcinoid Article in Popular Press!

  1. Cy, great article on carcinoid, I had the one liver biopsy but they say it is not good enough. I did ask my new liver doctor whether this could be a carcinoid since I have the flushing and palpatations.

    My new liver doctor told me what she thinks that is serious and did some more specialized blood work and may have to repeat the MRV which is like an MRI specifically checks the liver and also wants to do a laparoscopic liver biopsy with multiple tissue pieces and I told her I am not getting any better.

    I told her that I am getting really frustrated because I don’t have any more information than I did from the start and I am coughing up blood again and she said she is very concerned about that.

    Fondly,

    Tony

    1. Tony,
      Keep fighting! I am not a doctor at all, but with the coughing blood and possible liver involvement, it sure could be carcinoid. (Probably other things as well. It’s never simple.)
      I hope they get the right tissue samples and do the labs quickly and that it gives something to treat.

      May you have the best possible outcome,
      Cy

      1. Thanks Cy, my new liver doctor thinks the first sample might not have had an error to it because it was done as FNA, fine needle aspirate and thinks a liver biopsy through laparoscopic means should be done and agrees with me in the fact that the MRV was botched. She did run some more blood work that checks for rare illnesses.

        I figure by the time this is figured out it will be unfixable and uncurable which is already with 2 of my rare illnesses, but good luck to you, you seem to have things worked out.

        Yes the new liver doc at HUP says they are checking into carcinoid, I had said that months ago to my family doc and he never did anything, I like him but he could be more active than he is and I am not starting over with a new family doctor.
        Doctors do not listen to their patients at least my doctors anyway.

        Tony

  2. Thanks for the article. Newly dx with small 1 cm NET in rectum with possible node involvement… MRI soon. I’ve had palpitations for years and was stold not to worry, us women can have palpitations during menopause time. I should have worried but my symptoms were always so vague and strange. Each time I get sick, I get a large red rash under my arm pits which lasts 7 to 10 days. 4 years or so ago, I developped severe allergies (I got tested and have no allergies) but I walked around the house with tissues up the nose for a year, seriously, there was no rhymme or reason for it and no fix either. That stopped on it’s own.

    1. Hi Brigitte,
      I am sorry that you are suffering this. Please, please see a carcinoid expert, make sure your oncologist will cooperate with an expert’s opinion and learn all you can about this disease. Always remember the we carcinoids can live a long time with the proper care and treatment.
      http://carcinoid.org/ is a great place to start. They have a list of experts at: http://www.carcinoid.org/patient/treatment/find-a-doctor

      May you have the best possible outcome,
      Cy

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