so confused

I have had elevated serotonin blood for years now, all the symptoms of carcinoid but they cant find itI am I crazy! I was on sandostatin lar for 2 years and my levels went back to normal, but as soon as I went off symptoms completely back and blood serotonin back up! Does anyone think it could be something else? Its been 12 years and I am so frustrated! I went off shots in hopes to find it, and it made me extra tired all the time! Any advice would be greatly appreciated!

Hi natbug,   My husband was diagnosed with carcinoid one year ago.  They said he had it for a long time, but the doctors thought his symptoms were from diverticulosis. 

I want to encourage you to see someone who knows about this rare cancer.  My husband had surgery in New Orleans by the carcinoid dream team. During the surgery they found the primary tumor in his small intestine, plus alot more.  Look on the carcinoid cancer foundation site, they have a list of specialists in carcinoid there, find one near to you and talk to them about whats going on with you. There has to be a reason your serotonin levels are high. I'm not saying it is for sure carcinoid, but you need to find out for sure.  Take care, and let us know what happens.

God is seeing my husband and me through this, and He will do the same for anyone who asks Him. Take care,  Debbie

Hi Natbug, I think there is still a very good chance it is carcinoid. I had flushed for many years before developing heart palpitations, and then all of a sudden really bad abdo pain. My symptoms escalated quite quickly from there, but it was very difficult to get a diagnosis. Nothing showed up on scans or capsule endoscopy, and my blood serotonin was the only elevated marker (CgA initially elevated but went down after I stopped reflux meds). Plus, my blood serotonin was only elevated some of the time. A specialist trialled me on Sando and all of my symptoms went away. I have 12 monthly Gallium 68 PET scan, for which I go off my treatment. I have had 2 so far (and an Octreotide scan), and no tumours have shown up.

But ... there is an added aspect to this story. My Mum just had 9 carcinoid tumours removed from her small intestine - found only because she was having surgery for an ulcer to be biopsied. She had no symptoms, even though it had metastasized to a lymph node, and her largest tumour was 8mm. The doctors said it would most likely not have shown up on a PET scan. They could only see the tumours because of the light of the endoscope shining through the bowel wall. The problem is that many doctors only see the cases where there is a large solitary tumour, possibly with mets. The small tumours are not the ones that are often talked about, and yet they can metastasize.

Probably not what you wanted to hear, but important to know.

Some references:

Carcinoid Tumors and Carcinoid Syndrome: What they are, how they behave and how they are diagnosed   Presented by Richard R. P. Warner MD
                          Medical Director, Carcinoid Cancer Foundation, Inc.

"In 10% of carcinoid patients with metastases, that is, with tumors that have spread to a distant site, the primary tumor is not apparent. You can't find it. So, it's not an extraordinary event, therefore...."

"And it's not unusual, again, as some of you know, to have all the symptoms, all the appropriate chemical markers, and no discernible tumor, either primary or metastases. Such instances may be those in which there are only microscopic metastases."

From: Early-Stage Carcinoids of the Gastrointestinal Tract

Jun Soga (Cancer 2005; 103:1587-95)

GI sm carcinoids exhibited a metastasis rate of 16.4% (264 of 1614) as a whole and minute carcinoids (≤5 mm ) revealed an unexpectedly high metastasis rate of 6.0% (24 of 399) on average, which ranged from 3.7% (8 of 216) in the rectum to 17.2% (5 of 29) in the jejunoileum. Small carcinoids measuring 5.1–10 mm also showed a high metastasis rate of 13.3% (90 of 675) on average, ranging from 9.6% (12 of 125) in the stomach to 41.2% (14 of 34) in the jejunoileum. The combined average metastasis rate for both minute and small carcinoids combined (≤10 mm) was as high as 10.6% (114 of 1074).

It should be emphasized that, in 1074 patients with GI sm carcinoids measuring ≤10 mm (small and minute carcinoid groups combined), the rate of metastases was as high as 10.6% in the overall series, and even higher at 30.2% of 63 patients in the jejunoileum.

I would also recommend watching Rodney Pommier's presentation at the 2009 NET symposium as per the link below:

http://itr8.com/hosted/ccf/mtsinai09/presentation_links.htm

Blessings, Lauri.

Thanks so much for responding to me, does your husband ache all over frenquently? I gave my doctor that doctors name in Louisiana and told her to research him, hes awesome , Ive researched him for years! Thank you and may God bless you!

Thanks so much for responding to me, sorry about your mom, but that means you def have it too! actually I am almost certain I have it, but I am struggling to work and raise a family! I am so glad I have a great husband to help out! Do you have to work with your condition too? I have  had a slight elevated Cga too but it was fine when I was on sandostatin, I probably need to have it checked again! Do you ache all over , kinda like the flu alot? Thanks so much ! I have had octretide scans in the past but they were neg and its been years ago, my current ct scans were fine other than ovarian cyst and liver cyst! keep in touch let me know how you are!

Hi Natbug, I was interested to hear that you have an ovarian cyst - because I read an article that talked about a woman who had a tiny carcinoid in the wall of an ovarian cyst. It was too small to be seen, it was only discovered after they removed the cyst. But even though it was small it was a functioning carcinoid.

Because I have had the syndrome for so long with no tumours found I actually thought that mine might be in an ovary, because you can get syndrome from them without having liver matastases. That was before we found that Mum had those multiple small ones in her small bowel.

If you send me a private reply with your e-mail address I can send you some articles I have on ovarian carcinoids.

Blessings, Lauri.

Natbug,

You'd be surprised at how common this actually is.  I'd recommend staying on the sandostatin as long as it's helping your symptoms.  Try to get on with a carcinoid cancer specialist asap.  You'll need to be followed for at least 20 yrs.  

I started having carcinoid syndrome in 2004, but was misdiagnosed until Feb of 2010.  Luckily, the tumor started invading the intestinal wall... THAT is what was seen on the CT scan... not the nearly 1 inch tumor, but the thickening of the intestinal wall.  The CT scan also didn't pick up the 9 lymph nodes that had cancer in them either.  

I STILL have carcinoid syndrome.  Luckily, I have a good team of docs.  My oncologist knows that symptoms show up before (sometimes YEARS before) the tumors show up on scans. 

Try to get octreoscans once a year.  

i'm glad you posted!  It's important to have support when you're going through all of this.

My best,

Jen Holm

Hi Jenholm25, natbug and LauriG...I am in the same position as natbug. I actually think I have posted my issues before and one of you may have responded.

I have had carcinoid symptoms for exactly four years! ( I remember the very first severe flush and accompanying abdominal pain with high heart rate!) Since that time, I have had all the symptoms that Jenholm25 has listed. Vertigo, weakness, weightloss, headaches, RUQ pain and liver area pain. I have had one Octreo Scan, numerous carcinoid blood tests that included...CgA, Serotonin, Neuro Specific Enolase, Gastrin, Pancreastatin, and among others. I have only had one slightly elevated CgA and that was retested several time after that and it was normal. I have had sveral MRI's of ab/pelvis, a capsule endoscopy, colonoscopy, small bowel follow through, CT scans..you name it! I saw Dr. Warner in NYC and he felt I didn't have carcinoid but the symptoms are still very much with me and they never let up! My flushing is brief but a number of times each day. I am completely intolerant of heat anymore.

I called Dr. Lui at Vanderbilt University and he spoke with me at length. He said I had many tests and he believes that after having the symptoms I have with the severity I have them...that I would be showing liver involvement by now. My scans only show an 11mm hemangioma on my liver.

I am desperate to find out once and for all. I am at wits end so I completely understand Natbug's feelings.

Did anyone have severe constipation instead of diarrhea? I do not have the diarrhea commonly associated with carcinoid.

Would appreciate hearing back from anyone....Thanks and hope all of you are doing better.

yes, you can have constipation INSTEAD of diarrhea as part of your symptoms.  I know of a few people who have that problem.

Hi Bufalowgirl,

Even though I have flushed for many years, I did not get the diarrhoea until around the time I became suddenly ill with the so-called appendix pain, and post-surgery. Prior to this I had always tended towards constipation. And that was what I kept telling doctors - "It is not stress because I have always been a 'constipated stressor'!" And even after surgery, my "diarrhoea" was not the watery kind described by many. For me it was needing to go more frequently (sometimes up to 7 or 8 times in a day), but that did not happen every day. So unfortunately there are no absolute answers as to what to expect with this disease!

Blessings, Lauri.