Wednesday, March 23, 2011

Syndrome or Disease?

I don't know if it's the cancer or an unrelated ailment...but I'm in real pain. If Dr. House were creating one of his famous "white-board lists" of my current symptoms, it would read as follows:

* history of carcinoid tumor
* fevers and night sweats
* joint pain and stiffness in hips, fingers, toes, ankles, knees, lower-back
* muscle weakness and aching
* radiating, burning pain in shins, thighs, arms
* extreme fatigue and shortness of breath
* abdomen discomfort, cramping, pressure, bloating
* nausea and vomiting (infrequent)
* hot rash over face and chest that comes and goes
* heart palpitations
* low blood pressure
* heart rate that drops with exercise

I just finished a series of RX Augmentin for a lingering ear and throat infection...but it did not have any affect on my other symptoms.

So here's the million dollar question - is it possible that the collection of symptoms could be a result of a syndrome and not a disease? The difference between the two is a little confusing.

A "disease" is a term that indicates a health condition that has a clearly defined reason behind it, while a "syndrome" is a kind of medical mystery - and can produce a number of symptoms without an identifiable cause. To muddy the waters even more, certain diseases can cause specific syndromes.

Carcinoid Cancer v. Carcinoid Syndrome

Carciniod cancer is an extremely rare disease, and a very small percentage of carcinoid cancer patients develop carcinoid syndrome, which have the following symptoms (% of patients affected)

Flushing (94%)
Diarrhea (78%)
Heart Valve Lesions (53%)
Cramping (51%)
Telangiectasia (25%)
Peripheral Edema (19%)
Wheezing (19%)
Cyanosis (18%)
Arthritis (7%)

March 22, 2011 (4 pm) - iphone pic

March 22, 2011 (4:10 pm) - iphone pic

Out of all of those symptoms, I only have flushing (see above), cramping, and arthritis. In a few days, I'll have an echocardiogram to determine if I have heart valve lesions. I don't think I have carcinoid syndrome because usually if you have a midgut carciniod - the liver filters out the excess seritonine, which is the cause of the syndrome. If I do have the syndrome, that means that the carcinoid cancer has metastisized to my liver.

One of the things I don't understand is why none of my doctors have ordered a 5-HIAA test, which is used to determine if the carcinoid cancer has metastasized to the liver, most likely causing the syndrome. I guess that's another test I'll have to ask Dr. Nash about when I see him for my CT scan in April.


  1. Well, I am certainly nowhere near being apart of the House diagnostic team but I can offer you my perspective at least.

    So a syndrome can be a mystery like you mentioned but it can also be a non-mystery, like AIDS or Down's Syndrome. We know the variety of symptoms in AIDS can be traced to a virus and genetics for Down's Syndrome. What makes a syndrome a syndrome is having a multitude and dispersed symptoms that can be traced to a single cause.

    So obviously, in your case you are understandably worried about Carcinoid Syndrome. Oh look you are calling me. We'll chat.
    <3 m

  2. Perhaps when you are a famous doctor you can name this weirdo list of symptoms "Sistah Six Syndrome"... and then cure it :) xxxooo LOVE YOU!!!

  3. Hi Marlena,
    First I want to thank you for your blog. It has been inspiring and helpful as you and I have had similar helath challenges in the past year. Regarding tests for carcinoid syndrome you should definitely ask for the 5-HIAA test but also an octreotide scan. I had those tests done before my surgery.
    You are in my thoughts and prayers!

  4. Hi Annie!
    I'm glad you find the blog useful. My doctor doesn't believe in the ocetreotide scan - he thinks CT scans are much better for imaging carcinoid you know how reliable the 5-HIAA test is? I think if the latest MRI reveals the cancer spread, I'll ask for the 5-HIAA...I forgot to bring it up at the last doctor's appointment. Any info you have on it the test would be much appreciated.