FAQ - malignant carcinoid syndrome
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What is the survival rate for someone with carcinoid syndrome?

Particularly with a carcinoid tumor in the intestine that has spread to liver or has not?

From http://www.carcinoid.org/pcf/docs/review.html
Typical carcinoids are slow growers.

In those tumors that are somewhat larger and have spread to local tissues and local lymph nodes but which, along with these locally invaded tissues, are still totally removable surgically, the average survival has been 8 years with a range up to 23 years.

Even when the tumor from the small intestine has spread in a manner that has made complete surgical removal impossible, the older statistics show that approximately one half of the patients survive an average of 5 years. Since various types of treatment have been introduced in the past decade patients appear to have an even longer survival and improved quality of life.

Atypical carcinoids, which is a group whose microscopic appearance looks different and more aggressively malignant than the typical carcinoid, follow a much more rapid course with a more uncertain outlook. An even worse forecast can be made for the very more malignant rare group called "neuroendocrine carcinoma". Atypical carcinoids can cause the Carcinoid Syndrome, but neuroendocrine carcinoma rarely do.

The tempo of the course of the illness in patients with Carcinoid Syndrome is different than that of carcinoid victims without the functioning syndrome. However, this has been remarkably improved and the outlook is much more hopeful with the advent of octreotide and similar somatostatin analogues and other new modes of treatment. In the early decades before effective treatment was available the average survival from the onset of flushing for a Carcinoid Syndrome patient was 3 years, and from the time of diagnosis was 2 years, though the range extended to over 10 years. Seventy five percent of the patients would die as a consequence of the harmful effects on the body from the excessive amounts of potent hormones released into their circulation by the tumors. Tumor growth and spread itself was fatal in only 25% of cases. In the last 10 years, since we have used effective combinations of treatment with octreotide(and similar somatostain analogues), various types of surgery, chemotherapy, hepatic artery injections and biological response mediators, the average survival time from the start of treatment (which unfortunately is often quite delayed after the diagnosis is made) has increased to almost 12 years - with a wide range often being observed.   (+ info)

How are you supposed to treat Neuroleptic malignant syndrome?

I had it years ago and it took days for me to recover (the fools at Frimley Park Hospital didn't know what it was).
If I ever got it again, how would they treat it?

Try this link- it seems to explain alot.

This will give u a couple of different, informative links...

Good Luck to you.=)  (+ info)

How rare is carcinoid syndrome?

Any statistics on how many people it affects i.e. 1 out of 100 000? or any stats like that?

The incidence of carcinoids is probably 7-8 cases per year, but this approximation is underestimated because many patients never develop the related syndrome. Some researchers estimated real incidence may be 1-2 cases per 100,000 individuals.

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my son is a 20 year old down syndrome young man. he had a non malignant tumor removed from his throat and had

a tracheostomy put in about a year ago. it has not been removed because the swelling has not gone down yet. all biopsies come back negative. and they do not know the reason for the swelling. have performed a number of tests for different conditions and nothing has come up. if any one out there could shed some light, i will be forever greatful. thank you

I know how difficult it must be for you and your son especially when communication is compromised. It is unfortunate that tumors develop for no known reason. The underlying tumor may have triggered and autoimmune response to stimulate the sustained swelling. In some persons with Down's syndrome we can see this swelling at birth or even in early childhood with no relief and the result is a life long use of a tracheostomy. My question to you would be as to whether the ENT has attempted to utilize a 'speaking' valve so that you son can communicate with you. Have they had him seen by a speech pathologist to exercise his vocal cords to make sure that they are functioning correctly? What kind of antiinflamatory medications have the doctors prescribed? All of the answers are necessary to help give a better picture before I can make any more guesses. Sorry.  (+ info)

My mother has been diagnosed with Carcinoid Syndrome, a type of cancer....?

Anyone have any experience with this...apparently it is really rare. We live in a small town with doctors lacking expertise on the subject and are looking for someone, or somewhere else for treatment.

I don't know a lot about the pathophysiology of this disease, but I can tell you that I am presently administering chemo for a patient with carcinoid syndrome. We have her on Streptozosin (Zanosar) and 5FU (5-fluorouracil). She has had a partial response to this treatment and continues to be doing well.  (+ info)

neuroleptic malignant syndrome?

the doctors diagnosed this to me neuroleptic malignant syndrome will I die early will I go into another coma/? P\lease help.
do Ihave cancer?

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Information on carcinoid tumors/syndrome?

My doctor feels that I have carcinoid tumors/syndrome. She said the 5-HIAA test and the Chromagranin A test do not detect all forms of carcinoids (she is referring to gastro tumors). What test would show small intestinal carcinoids?


With a certain degree of clinical suspicion, diagnosis is made primarily by measuring plasma levels of the secreted glycoprotein Chromogranin A, supported by measuring the 24 hour urine levels of 5-HIAA (5-hydroxyindoleacetic acid), a breakdown product of serotonin. Patients with carcinoid syndrome usually excrete >25 mg of 5-HIAA per day. For localization of both primary lesions and metastasis, the initial imaging method is Octreoscan, where 111Indium labelled somatostatin analogues (octreotide) are used in scintigraphy for detecting tumors expressing somatostatin receptors. Median detection rates with octreoscan are about 89%, in contrast to other imaging techniques such as CT scans and MRI with detection rates of about 80%. Usually on CT scan, one will note a spider-like/crab like change in the messentery due to the fibrosis from the release of serotonin. PET scans, which evaluate for increased metabolism of glucose, may also aid in localizing the carcinoid lesion or evaluating for metastases.-  (+ info)

Possible carcinoid syndrome?

irregular pulse (resting heart rate of 100)
shortness of breath
severe and constant headaches (constant for 7 weeks, now i get them 2-3 times a week)
Slight abdominal pain at the top in between ribs when lightly pressed
Loss of appetite

I am 18 and have been experiencing these symptoms for 3-4 months. I went to a neurologist today and she suggested that i have carcinoid syndrome. She has ordered blood tests and a holter monitor.

Does this seem like a correct diagnosis, or could it be something else?
Im not pregnant, nooo way.

I also forgot to mention that i have had a CT Scan of my head and that came back inconclusive.

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A scenario involving SSRI/SNRI administration in serotonin positive carcinoid syndrome (please read on)?

Consider someone who has yet to be diagnosed with serotonin positive carcinoid. Reasons for seeking medical attention include: "flushing", diarrhea, and an atypical symptom like, nausea. The primary GP, whilst investigating possible etiologies thorough various imaging and serum modalities, prescribes a low dose SNRI until test results can be ascertained. Perhaps, under the working hypothesis of IBS, anxiety, or simply as a means to provide relief from suffering (i.e, the aforementioned sxs) via the anticholinergic properties of a given SNRI.

If a person who actually had serotonin carcinoid syndrome took these meds, what would you expect would happen? Serotonin syndrome? A paradoxical reaction? Exacerbation of primary sxs? Something else?

BTW: Not a personal Q. Just curious :-).
Please excuse my spelling mistake above: "thorough" should be "through" and I should not have included "SSRI" in the header Q. Oppsie. Sorry, guys :-).
Thanx for answering, Spreedog :-). A lot of extra info too. Cool!

It just seemed to me, after doing my own reading, that a patient with this rare condition may be initially treated for anxiety. The sxs mimick the condition, from what I can see.

I envisioned an SSRI or SNRI perhaps even being an appropriate "soothing" choice as an effort to ameliorate pesky sxs while other tests are pursued. But, so, I simply wondered what would happen IF an SSRI or SNRI was, indeed, prescribed, all the while without info that the patient has this syndrome where SSRI's may not help, but even be a dangerous choice.

I guess you are saying administration would exacerbate originally presenting sxs, yes? So, no paradoxical reaction? No serotonin syndrome, either? No room for individuality in terms of response, either? I mean, aside from "primary sxs" presentation that is. The drugs would make presenting symptoms (whatever they may be) worse. Period. Yes?
If these tumors are secreting serotonin, I'm not sure how that would/could result in heart palpitations. One would expect the opposite, no?

I also wonder how closely sxs would mirror SSRI overdose--i.e., serotonin syndrome...

I'm essentially making queries out of my a$s here. I know nothing about this, but I find it really interesting....

Had to do some research on this one.
This situation isn't common; I never had a patient with this in 20 years.
Also, since cytotoxic chemotherapy works poorly if at all for the majority of these patients, medical oncologists are not always consulted.

An NCI (USA) study http://www3.interscience.wiley.com/journal/102528538/abstractevaluated 10,878 carcinoid tumors that were identified by the Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute (NCI) from 1973 to 1999 - - so that's only 418 cases per year in the U.S. with onlly a fraction having carcinoid syndrome.

From Medline Plus : http://www.nlm.nih.gov/medlineplus/ency/article/000347.htm { A Mayo Clinic Review says nearly the same thing.}
Carcinoid tumors are rare, slow-growing cancers that usually start in the lining of the digestive tract or in the lungs. Because they grow slowly and don't produce symptoms in the early stages, the average age of people diagnosed with digestive or lung carcinoids is about 60.
In later stages the tumors sometimes produce hormones that can cause carcinoid syndrome. The syndrome causes flushing of the face and upper chest, diarrhea, and trouble breathing.
Surgery is the main treatment for carcinoid tumors. If they haven't spread to other parts of the body, surgery can cure the cancer.
- - - -
Most carcinoid tumors have no symptoms. They only produce the syndrome about 10% of the time. So the syndrome is a rare manifestation of a rare malignancy.
When symptoms do occur, they may include:
* Abdominal pain that comes and goes
* Bright red flushing of the face
* Diarrhea (may be explosive and severe)
* Heart palpitations
* Low blood pressure
* Wheezing
Sometimes symptoms are brought on by physical exertion, or eating or drinking things such as blue cheeses, chocolate, or red wine.
- - - -
A serotonin antagonist may be prescribed to control diarrhea and poor absorption of nutrients from the intestines (malabsorption).
Avoid alcohol, large meals, and foods high in tyramine (aged cheeses, avocado, many processed foods), because they may trigger symptoms.
Some common medicines, like selective serotonin reuptake inhibitors (SSRIs, such as Paxil, Serzone, and Prozac) may make symptoms worse by increasing levels of serotonin. However, do not stop taking these medicines unless your doctor tells you to do so.
One of several combinations of chemotherapy may be given through a vein (IV) or by mouth. If one combination does not work, another combination may be effective. About one-third of patients benefit from chemotherapy. But responses are limited and partial; chemotherapy is not a cure in this type of malignancy.  (+ info)

I am being tested for carcinoid syndrome/tumors...Help?!?

I am being tested for carcinoid syndrome/tumors.
I get really nausated my body heates up and i get red blotches (flushing) on my head and neck and chest. I do have diarrhea too. I cramp and have low blood pressure which causes me to blackout/faint.

How often do youhave to have flushes and diarrhea to be considered?
When I have diarrhea It is bad and lasts hours at a time..

This has been going on for 6-7 years and finally a doctor says this..could this really relive my symptoms and be the issue?

its possible and worth checking for  (+ info)

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