Jared,

Has your gastro asked you to do an Octreoscan?   There is absolutely NO NEED for this exam with you!!   With those elevated histamines of yours, those exames are INDICATIVE of mastocytosis and NOT the Carcinoid Syndrome!!    Yes, your gastro would consider carcinoid before considering masto because masto is so much more rare than carcinoid is, however, there are blood and urine tests to ask for BEFORE going into the octreoscan because the octreoscan uses nuclear medicine and so they only ask this AFTER the blood and urine work come back INDICATING that there is this cancerous tumor!  It's never asked for as an inicial exam due to the fact of the radiation involved.   And in your case, it is TOTALLY unnecessary due to the fact that you ALREADY have a marker for MCAD!!!    This gastro has NO IDEA of what he's doing Jared!!

I have had to exhaustively RULE OUT carcinoid syndrome and I went to Brazil's two highest authorities in these tumors, one in Sao Paulo and the other in Rio de Janeiro and BOTH OF THEM FULLY RULED IT OUT!!   I had to run through the biochemical testing a THIRD time just to make my dermatologist happy  and AGAIN we ruled it out!!   I NEVER WENT THROUGH THE OCTREOSCAN for NONE of them felt it was necessary to subject me to the radiation due to the fact that I could not produce ONE SINGLE MARKER INDICATING carcinoid!!!  MY URINE HISTAMINES ARE ELEVATED!!  But nothing else!!!


Oh, it makes me hopping mad when these doctors go putzying about with us patients!  They're trying to play EXPERTS when they are not!!  If your gastro really suspects you have the carcinoid syndrome then he needs to run you through the typical cancer markers, along with CGA- Chromogranin A and 5-HIAA - Urine Methyl Serotonins and Serum Serotonins.   These exams, when they are elevated are the indicators for carcinoid syndrome!!    I have spoken with Dr. Metcalfe about the levels of histamines within masto and carcinoid patients and he told me that very, very rarely will carcinoid elevate histamine levels in patients and even then, they won't go as high as we masto patients do!!  

Your doctor is trying to rule out other possibilities, but it's really not necessary to ask for the octreoscan unless you show other markers for carcinoid.  But having shown a marker for masto, he's obviously going in the wrong direction.

Lisa

Jared,

The endoscopy and colonoscopy are VALID exams and they should be done!    People say that it's not so necessary but I wholeheartedly disagree with this and my own son's case is proof of this.  We have basically "diagnosed" him even before a bone marrow biopsy.  He's got mastocytic enterocolitis and we've found an aggregate of mast cells in his intestines.  He would not be diagnosed as mastocytosis YET, but we're only in the initial stages of diagnosing him.  The fact that he has this focal of MC aggregates shows that this is indeed mastocytosis and it's in it's infancy stages.  We are now going ahead with the other markers and depending upon them, we will be moving towards a bone marrow biopsy.   My son doesn't even have all of the symptoms of masto yet, he's got other issues and is showing autoimmune markers.  Yet my doctor suspected that his case could be following mine and because he had been bleeding from his rectum, this is what forced my doctor to say - have him gone over with his GI tract!  Sure enough this is where it is!!

But it's important to  have these exams for masto affects us more gastrointestinally than in almost any other system.  It causes problems within our intestines and wee need our doctors to take a look and do fully biopsies all the way down the line.  Then they need to be submitted for the masto immunohistochemical testing with the appropriate markers.  This will give at least a baseline for how the disease is affecting your system and is good to have done.   I'm about to go through another one of these and I spoke with my gastrologist the other day and I'll be meeting with the anesthesiologist, cause this must be done in the OR with me due to my reactions, but most people are not so reactive and the exam is not a big deal for them.  

So, Jared, these exams are indeed valid and go ahead and do them.  But be properly pre-medicated for them, this is important.  


Lisa

Hi Susan,

There are several kinds of Neuroendocrine Tumors - NETs and depending upon which one you may have, you have different markers.  NETs are very difficult for oncologists to diagnose because they are often very small and very slow growing tumors and depending upon the kind of endocrine cells they are made of and also depending upon WHERE they are located in the body, they will secrete various types of hormones.  It is the constellation of hormones that they release which cause so many symptoms for the patients.  These tumors really must be investigated by ONLY SPECIALISTS and experts in these tumors for the authorities will OPENLY admit that there are cases which defy even their abilities to find those tumors.  

As specifically the VIPoma that you are referring to, I don't know much about it.  I know that there are a couple of types but I don't know their markers.  Yet, I believe that these tumors don't generally produce flushing and are therefore not usually considered the differencial diagnosis for mastocytosis.  The Carcinoid Syndrome is the one NET which is most consistently suspected as the differential diagnosis for mastocytosis and therefore the one which is most tested for.  I think that if you have any reason to suspect a NET that you should seek out a specialist in NETs and have it properly investigated.  

I say this because in the process of my being worked up for masto I first had to find someone who could recognize my symptoms.  My gyno is who raised the suspicion for he knew my symptoms, saw me go through an intense flush with intense dyspnea and that's what clued him.  He sent me to our city's best gastro with the suspicion for Carcinoid and the man ran some tests looking for cancer, but he really hadn't a clue as to what he was doing and I knew that after I was finally in the hands of specialists.  The two oncologists I saw did suspect carcinoid due to my symptoms but they openly said WE CAN'T INVESTIGATE YOU - IT'S TOO DIFFICULT!!  They sent me to an expert in Rio de Janeiro.  When he ran up against a wall we me he sent me to the highest in the country!!   The first one had properly investigated me and was 95% certain that I didn't have it, but what caused him difficulty is that I get hypertensive in crisis - he didn't know that masto can cause hypertension in anaphylaxis and because he didn't know this, he figured that masto was impossible!!  The highest authorities could not add a single exam to my oncologist's and they also ruled it out!!  Yet, they didn't know masto and they didn't test me for anything which could raise masto on board and I was left to go hunting for masto specialists.

So, this lesson taught me that when you have a rare disease, the doctors are even more rare than we patients are and you must seek out specialists and experts in order to properly investigate something.   And since NETs are cancerous tumors you must rule this out first before anything else.  

I hope this helps

Lisa

Jared,

Sorry to tell you this but your allergist is TOTALLY WRONG and doesn't know a hoot about mast cell disorders nor mast cells!  

I'll send you information which proves that masto does indeed produce hypertension in anaphylaxis!!   My doctors didnt'know this either which is why I ran about in circles for 50 thousand years until FINALLY we had enough information.   I will send you what I have!!

silly doctors - they think they know EVERYTHING and won't admit it that they don't!!   I do NOT trust these doctors!  I TRUST a doctor who looks me in the eye and say, I DON'T KNOW, BUT I WILL FIND OUT IF I CAN!   This is the kind of doctor you can put your life in his/her hands!!

Lisa

Hey Lisa....It's Jared!

My name on here is Godsgal    

By the way, Gaynell, send me a pm with your email and I'll send you the hypertensive information -   I sent it all to Jared.....and Susan got in on this too!!  I'll be more than happy to send it all to you as well!!  

Sheesh, how dumb can I get ?!!  

Jared, nice to meet you!   And you too, Susan!