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The Carcinoid Syndrome - The Differencial Diagnosis to Systemic Mastocytosis - Know the competition! (Read 29710 times)
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The Carcinoid Syndrome - The Differencial Diagnosis to Systemic Mastocytosis - Know the competition!
01/02/11 at 14:25:52
 
(Archived from lisathuler - original forum)
I spoke with Deborah about starting a threat that addresses the Carcinoid Syndrome.  This neuroendocrine tumor is the major differencial diagnosis to Systemic Mastocytosis.  This is what doctors will suspect when we have no skin lesions for the constellation of symptoms to these two disease are ALMOST EXACTLY ALIKE!   I've spoken with other patients who are purely systemic and I know that I'm not the only one who had to go through a formal investigation into the Carcinoid Tumor and then once it was ruled out proceed to investigate Systemic Masto.  

So, I'm going to be putting up sites and information here along with the URL so that you can access these sites for yourself.  I'm no expert in either carcinoid or mastocytosis, but I've done some intensive study into the both of them.  I made serious mistakes in judging my situation based upon what I was reading about carcinoid and when the tumor was ruled out it ended up being the major teaching tool for how NOT to research my own disease!   I learned to think like a doctor thinks, ONLY allowing PROOF to show me the directions that I needed to go in.  I turned off my emotions and my fears and looked at "my case" from a distance and as  3rd party not allowing my emotions to get involved in my studies.  This helped me not to fall into the trap that so many patients will fall into in allowing their fears and emotions to shadow their thoughts and thereby draw conclusions that are false.   Clear headed thinking is ESSENCIAL to the medical investigator.  

Not only am I going to be adding information here, but I'm also going to be teaching the differences between the two diseases as according to what I have been able to learn from my studies as well as with speaking with not only my own doctors but also researchers in Systemic Mastocytosis.  I have had the priviledge of speaking with Dr. Akin, Dr Castells, Dr. Escribano and Dr. Metcalfe over the past 4 years and their answers have helped me to gain insight and understanding not only of mastocytosis but also as related to carcinoid.  

I hope that this thread will end up helping not only new patients understand better, but also older patients who want to help the newer ones.  

Lisa

31 August 2010 10:22 PM
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Re: The Carcinoid Syndrome - The Differencial Diagnosis to Systemic Mastocytosis - Know the competition!
Reply #1 - 01/02/11 at 14:27:04
 
(Archived from lisathuler - original forum)
As to the Carcinoid crisis.....and anaphylaxis.  You are right, Ramona, anaphylaxis is not a symptom of carcinoid, but the carcinoid crisis and anaphylaxis are almost indistinguishable to us patients -  we don't know the difference between them.  Their flush is more intense and longer lasting and perhaps that's one way the doctors can tell the difference, but they go through almost the same symptoms, diarrhea, abdominal pain, brochospams with wheezing, and flushing with hyper or hypotension.   And even with ourselves going into anaphylaxis - we don't have that certainty that we're really in anaphylaxis and not the carcinoid crisis or even some other kind of crisis until we've got something to prove that it is what it is or a doctor who identifies it for us.   This is the danger we partients are in when we have our huge reactions in that until we have some kind of proof, unless a doctor can identify it for us, it's extremely hard to know exactly what it is!   Take reflux, for example - it's known to mimic a heart attack!.

You see, I've made these mistakes!  I can remember going through 3 and 4 hour long crises in the ER and not getting any kind of medication but a sedative or a muscle spasm med due to the abdominal pain!  They would not give me anything because they didn't know what it was.  They thought it was panic attack and God only knows what else.  When we didn't know what the suspicions were it was horribly frustrating because we were frightened as to what was happening.  Nobody recognized it as anaphylaxis cause I was hypertensive.  They honestly thought it was emotional!   Then once the suspicion for carcinoid and masto were raised, I didn't understand why they didn't give me anything, but I didn't know how dangerous it was that they didn't jump on top of the suspicions!  I was in a state until my oncologist gave me Allegra and this cut my reactions!  Well, it would have served for both masto and carcinoid due to the fact that I was having pseudoallergic reactions.  When I had the severe reaction to the contrast, I wasn't given anything but a sedative to bring my pressure down!  Yet I remained flushed for hours and in syncope, but this syncope was not a typical reaction for carcinoid and this should have tipped somebody off, but it didn't.  Then, later, when my oncologist sent us to the highest authorities in this disease, the oncologist saw me go through a strong flare.  He saw the way I reacted - no broncospasm, the flush was not as intense, and I just didn't have the same reaction that a carcinoid patient has.  He KNEW that it was not a carcinoid.  He didn't know it was masto, but he KNEW carcinoids and he KNEW I didn't have it!    This is why I say, either you've got to have some proof of your disease or you've got to have a doctor identify it for you.

As to the antihistamines and the use of them for carcinoid patients.  They DO go through many of the very same triggers we do - heat, cold, stress, emotions, foods, medicines and contrast!   And it is at this time that the antihistamines work for them!   My oncologist told me today that they have the very same pseudo-allergic reactions and this is why he prescribed Allegra for me so that when I would react to these things, that I had a means to counteract it.  Yet, whether or not those allergic reactions will run into the crisis event as easily as a masto patient's reactions will lead into their crisis event of anaphylaxis I don't know.  It may take them more reacting to get into trouble with it.  And this may have to do with the fact that mast cells are a great deal more abundant.  

An example of this is by the Test to provoke the flush.  Before they found the biochemical markers for masto and carcinoid they used to have the patients drink a glass of red wine and then give the patient epinephrine to see if the flush would disappear.  If the flush disappeared, it was a masto patient, if the reaction went into a crisis, that was the carcinoid patient!   They also used to do the same thing with an epinephrine drip - the patient who flushed with the epinephrine was the carcinoid patient - no flush was the masto patient!   Why?  Because epinephrine for the carcinoid patient is DEADLY!   For us, it saves our lives!

As to the working with both patients in comparing the two crises and reactions, one big difference between the two is this:  Carcinoid is a malignant neoplasm, but it is concentrated in the form of a solid mass.  Mastocytosis is also a neoplasm (I'm not talking about MCAS - but systemic mastocytosis), but it is considered a BENIGN neoplasm in the majority of cases.  Yet it is not in the form of a solid mass, but aggregates in clumps and stays in a celular form without making a "lump" (except in the form of the mastocytoma).  This makes a very big difference in how the two diseases function.  For example, when surgeons must remove the carcinoid tumor, they must be extremely careful not to touch the tumor itself or it will release it's mediators and put the patient into the carcinoid crisis.  Yet, they can touch anywhere else and it won't trigger them!  The quantity and strength of their mediator release is tremendous.  Anesthestics is also an issue for them, but if they are taking the appropriate medicines then they'll be protected.  Well, with masto patients the youve got a dual problem in dealing with the neoplasm.  It is diffuse throughout the entire body, it's not in a solid, lump form so that you can locate it and remove it.  Yet, there are also focal points of where they are concentrated and if you touch them, you'll trigger them.  This is why the literature will say that surgeons must be extremely careful in disturbing the intestines for they've got a ton of mast cells in there.  And even with MCAS, we may or may not have an invasion of our tissues with mast cells, however, our mast cells throughout our body are extremely sensitive, or we are overwhelmed with a proliferation of them and this is what triggers the huge systemic reacations.  If a patient has way too many mast cells in their pancreas and the doctors decide to remove it, they must be careful to premedicate the patient, and they must be extremely careful in touching the pancreas for manipulating it will cause the mast cells to degranulate en mass.  So, working with the two patient groups are different due to the source of their mediators - one is located in specific spots only and limited to that place only.  If it's a carcinoid in the ovary, then it's ONLY in the ovary and it will not mestastise to the liver - it is in the intestines, then it's only in the intestine but it mestastizes to the liver making it incurable.  But that will not mestatise anywhere else (as far as I know) - this tumor is not aggressive like many other tumors and so if you can remove the ovary and that portion of the intestine before it mestastized, the patient is 100% cured.   This is not the case for masto - remember, masto is a blood related disorder and it's more like any other blood disorder in that it's throughout the entire body.  

The carcinoid syndrome is not the same as the carcinoid crisis. The syndrome is what they call the constellation of symptoms.  They could have done the same with masto and called it the Mastocyte syndrome or something fancy like that, but they didn't and perhaps that may be due to the fact that this involved the mast cell itself whereas the name carcinoid is the type of tumor.  This is why the carcinoid is a subgroup of Neuroendocrine tumors or "NETs", it's because the tumor is made up of endocrine cells - the hormones come from the cells, just as they were programmed to do.  How and why it forms, I really don't know.

The carcinoid crisis is similar to anaphylaxis in that it's is basically made up of the same symptoms of the syndrome, but only intensified to the point that you must intervene or the patient could die.  Why and where the name anaphylaxis came from, I don't know, but it could be called a Hystamine crisis if they wanted to get technical about it.   But funny thing is with research these days, it may not be so much the histamine which is the issue, it could be the Platelet Activating Factor - PAF that's the bad guy here - supposedly a little goes a long way.    Yet, because of the different causes of these crises, it is essential that the difference is know for again, you must deal with them individually and with the approprate medications.

As to the food reactions.  Guess what, I was reading today that with the carcinoid they must avoid the "amines" within foods.  They've got to have a low histamine diet and even more foods than we are limited to!   And, depending upon the masto patient, there are foods that some of us can eat that others of us can not.  I don't think it works that way, they all may have to avoid the same kinds of foods.  Why?  Well, when I spoke with Nancy Gould a little while ago she feels that the reason why we are all so different is due to our specific genetic makeup.  I do'nt think that carcinoid patients have this "luxury" or "frustration" and that they can get away with cheating on a chocolate bar on a "good" day.  I don't think they have the luxury of a "good" day!  I think their disease is more consistant for them.  But again, I'm not certain because I've not spoken with a carcinoid patient about these things.  


I know some of you are wondering , why does Lisa keep talking about these carcinoids?!  This is a masto site!    Yes, you all are right, this IS a masto site, but for those of us who don't have any spots to give us away, we are patients who are in a real fix and in a great deal of danger.  Some of us are fortunate, something about our case made our doctors think Masto and not Carcinoid, or in their random testing, something came up that showed them the direction!   I wonder if I had gone to the hematologist who asked for the 24hr urine histamines test first, before I went to the oncologist if life wouldn't have been a great deal easier and I would have avoided a lot of grief.  But it didn't work out that way and I went through the carcinoid investigation first.  Not everybody ends up having to go my route, but most of us do have our doctors at least doing the 5-HIAA urine test just to check it out.  But you must remember, like it or not, the carcinoid syndrome IS the Differencial Diagnosis for Systemic Mastocytosis.  There are going to be patients, like me, who come onto a Masto website, trying to find out answers by listening and asking patients what they go through in order to see if they may be a masto patient instead of a carcinoid patient.  I DID THIS!  I spoke with patients on both sites as well as CU sites and IA sites.  I still participate on an IA site!  I gained a great deal of understanding and after that carcinoid was ruled out, it was my understanding of how masto worked that helped me make connections as to what I was reading and as to what had changed in my body.   It's only right that we help other patients who are without spots try to understand it all and since I studied about carcinoid pretty intensely, I can't help but feel that it's very important when a patient has their doctors who are still trying to sort it all out not end up having us convince them as to  which disease it could be.  These tumors are considered the hardest of all tumors to diagnose!  The authorities themselves will admit that there are cases that they just can not solve!  Those researchers are as challenged by the carcinoid as the masto researchers are with our disease!

So, my friends, please be patient with me when I will sometimes run back to going over these things for new patients who don't yet have a diagnosis.  We're all trying to help, but I think everyone would agree, it would be a horrendous thing if we were to unwittingly convince a patient that they are masto merely due to their description as to what they go through and then that patient should end up getting side-tracked.  We all have the best of intentions and because we are only patients, we may end up doing more harm than good even with such good intentions..  

I just want to err on the side of precaution!  Someone's life could be in the balance and it's important that new patients who are totally systemic no spots at all, should know that there is this competition that must be seriously considered.  


Lisa

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Re: The Carcinoid Syndrome - The Differencial Diagnosis to Systemic Mastocytosis - Know the competition!
Reply #2 - 01/02/11 at 14:29:34
 
(Archived from riverwn2 - original forum)

Lisa that is great information, everything you posted plus the power point presentation! I will remember what you said and I support the fact that testing to rule it out is extremely important,even life saving. You're my wise one Ohhh LisaZilla Smiley
Love you bunches  (Debbie too!)
Ramona


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Re: The Carcinoid Syndrome - The Differencial Diagnosis to Systemic Mastocytosis - Know the competition!
Reply #3 - 01/02/11 at 14:30:35
 
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Re: The Carcinoid Syndrome - The Differencial Diagnosis to Systemic Mastocytosis - Know the competition!
Reply #4 - 01/02/11 at 14:33:16
 
(Archived from lisathuler - original forum)
Please note:   The above material is from a reliable medical site that is well respected amongst the medical community.     This material has been provided so that patients who are experiencing systemic related symptoms primarily that of:

FLUSH
ADVERSE REACTIONS TO FOODS AND MEDICATIONS
DIARRHEA
HYPERTENSIVE/HYPOTENSIVE BLOOD PRESSURE CHANGES
ABDOMINAL PAIN
CRISIS EVENTS

WITHOUT ANY APPARENT SKIN LESSIONS!  


It is Extremely Importantt that those patients who DO NOT have any kind of blood or urine testing CONFIRMING MAST CELL ACTIVATION speak with their doctors concerning the Carcinoid Syndrome.  

It is a known fact that Mastocytosis and Carcinoid Syndrome produce almost identical symptoms and therefore this places both the doctor and the patient in a quandry as to differenciate between the two diseases.

It is therefore imperative that the patient first work with Oncologists specialised in Neuroendocrine Tumors, of which is the Carcinoid Tumor and the Pheochromocytoma,  in order to rule out these threats before embarking upon an investigation into a Mast Cell Disorder.  This is because when you have the suspicion for certain diseases, those which are most life threatening are what must be investigated first.  Therefore, these tumors must be considered of highest priority.


*  Note.  In the section under Differencial Diagnoses, there is no open mention of Systemic Mastocytosis mentioned as one of the presenting diseases.  However, Anaphylaxis is!   This is erroneous information.    I could have taken information upon the Carcinoid tumors from another site, however, Medscape is considered one of the most reliable sites available.  This one overlooked bit of information did not invalidate the rest of the information available.    I will post the confirmation of Systemic Mastocytosis being the Differencial Diagnosis of Carcinoid Syndrome below.

04 September 2010 02:39 PM
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Re: The Carcinoid Syndrome - The Differencial Diagnosis to Systemic Mastocytosis - Know the competition!
Reply #5 - 01/02/11 at 14:34:17
 
(Archived from ;lisathuler - original forum)
NOTE:   The following information is provided by Mascape as pertaining to Systemic Mastocytosis.   The section regarding Differencial Diagnosis is provided.


FOR EDUCATIONAL PURPOSES ONLY


http://emedicine.medscape.com/article/203948-diagnosis

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Re: The Carcinoid Syndrome - The Differencial Diagnosis to Systemic Mastocytosis - Know the competition!
Reply #6 - 01/02/11 at 14:35:42
 
(Archived from lisathuler - original forum)
From;   BIOCHEMICAL DIAGNOSIS OF SYSTEMIC MAST CELL DISORDERS
L. Jackson Roberts II and John A. Oates
Dpts of Pharmacology and Medicine, Vanderbuilt University, Nashville, TN
Copyright 1991 by The Society for Investigative Dermatology


Page 20S

DIAGNOSTIC EVALUATION OF PATIENTS SUSPECTED OF HAVING SYSTEMIC MAST CELL DISEASE

Exclusion of Other Disorders Associated with Flushing.

Once the possibility of systemic mast cell disease has been entertained clinically, specific diagnostic measures should then be undertaken to confrm the diagnosis.  It is important to recognize that other diseases, although not many, are associated with episodes of flushing and need to be excluded.  Foremost among them is the Carcinoid Syndrome.  Others include Vasoactive-Peptide-Secreting endocrine tumors, such as islet cell tumors, and medullary carcinoma of the thyroid.  Virtually all patients with carcinoid syndrome exhibit elevated urinary escretion of 5-hydroxyindoleacetic acid (5-HIAA).  Thus as long as a patient is not receiving drugs that can interfere with the assay, normal urinary excretion of 5-HIAA will exclude the diagnosis of carcinoid syndrome with confidence.


NOTE:  THIS PORTION OF TEXT IS DATED AS OF 1991.  TESTING FOR CARCINOID SYNDROME HAS BEEN MODIFIED SINCE THEN.

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Re: The Carcinoid Syndrome - The Differencial Diagnosis to Systemic Mastocytosis - Know the competition!
Reply #7 - 12/09/12 at 01:38:16
 
Please help me understand this as I saw Dr. Afrin on 11/26. He tested me for the usual mediators for MCAS but also for TNF, chromogranin a, norepinephrine, dopamine, epinephrine, something enolase ( brain fog). I am now very concerned about a pheochromocytoma or carcinoid. All but the TNF were elevated.  But I know that these can also be mediators released in MCAS. I know a few folks who have had both. I have never had full blown anaphaxis but can't eat or drink any of the things listed for carcinoid without having a terrible reaction. I am waiting for my internist, Dr. Afrin. And my endocrinologist to figure out what to do next and am a bit concerned. I keep looking up the symtmops and they seem the same as what I am experience with alleged MCAS.  HELP PLEASE!!!
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Re: The Carcinoid Syndrome - The Differencial Diagnosis to Systemic Mastocytosis - Know the competition!
Reply #8 - 12/09/12 at 18:56:36
 
Hi gumby,
I also have seen Dr Afrin and had those same tests done (lab screwed up and forgot to run epi, dop, norepi).  My TNF, NSE (neuronal specific enolase) and heparin were elevated, and resulted in my diagnosis of MCAS.  You are correct TNF, NSE and Chrom A are nonspecific markers for mast cell activation, but when my heparin was high, this is definite finding of mc activation, since the body has no other source of making hepain.  

If pheo or carcinoid han't yet been ruled out, it is best to have that done sooner than later.  And since Dr Afrin is a hematologist/oncolgist, I can't think of a better physician to direct your future testing.  But if you have any testing indicating a tumor, there would be more tests, phone calls flying and more tests lined up already.  I hope this can help ease your mind.  Best wishes and please keep up updated.  

Lyn
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Re: The Carcinoid Syndrome - The Differencial Diagnosis to Systemic Mastocytosis - Know the competition!
Reply #9 - 12/10/12 at 02:32:07
 
Hi Gumby!!

One of the lessons I´ve learned in my journey is that you must go to specialists for both of these things.   Dr. Afrin is an excellent oncologist/hematologist who specializes in MCAS.  He knows plenty about carcinoid, but since the Carcinoid syndrome and NETs tumors are very difficult diagnoses to rule out and you really should not depend upon only one doctor to do this.   This is no comment upon Dr. Afrin´s abilities but only using wisdom.  Even though my dermatologists is a specalist in masto, this does not make her capable of ruling out Carcinoid and my case had her in doubt several times even though I had gone through a very thorough investigation by two different AUTHORITIES in NETs!     I wasn´t showing any altered markers for carcinoid whatsoever and in fact my serotonin levels are way below normal, which is something that carcinoid will NOT do.  But the symptoms and behavior and the fact I get hypertensive with a crisis so confused my dermatologist that she had serious doubts which needed for another doctor to resolve.    

I know it would be so much easier for us to rely upon only one specialist, but the overlapping symptoms and markers create TONS of confusion and the fact that of the two diagnoses; the Carcinoide and NETs (neuroendocrine tumors - pheochromocytoma, etc) produce a syndrome which is so very similar and makers means that you can not and should not rely upon only one specialist to rule out both.  Each one is extremely challenging and requires a specialist in each of them to do the necessary testing.   And when you are talking about a cancerous tumor, you must not fool around!!!   This diagnosis takes the priority over masto EVERY SINGLE TIME!!!   If you had aggressive masto your doctors would have been doing flip flops long ago cause it SCREAMS out at them.  So, if you do have MCAS you are most certainly NOT going to die from it!!  Yet, you WILL if it´s the NETs or Carcinoid!!!  

So, you must find a specialist in NETs and Carcinoid and get going on a formal investigation into that and RULE IT OUT before you can safely say that it´s really masto.  

Lyn, I believe you´ve had the testing for carcinoid prior to seeing Dr. Afrin, right?  And you are right, Heparin is released only from MCs, however, other cells can trigger the MC and thus cause those elevated levels of heparin.   In your case I believe it´s the overall picture which would be painted especially when the various mediators are vague suficiently to create doubt as to the presence of the carcinoid.

You see, there are more markers for carcinoid than just those of CGA and Serotonin and it´s the overall cancer picture which those tests produce which paints the picture.  So, although masto can indeed make the other markers go off, but how much and in which direction they go is what paints the overall picture and when that picture points to masto then Dr. Afrin is indeed the man to see, but not to fully rule out carcinoid, that requires a specialist in those tumors.


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Re: The Carcinoid Syndrome - The Differencial Diagnosis to Systemic Mastocytosis - Know the competition!
Reply #10 - 12/11/12 at 04:46:29
 
Thank you for the replies. I suppose what I am most concerned abot is that the typical MCAS markers were normal- prostaglandin2, n- methyhistamine and histamine was only mildly elevated - 1 point above normal. However ALL of the tumor markers were high and high I have been having early morning 3-5 am waking like I was shot out if a cannon with severe abdominal pain. This is very concerning and when I went to the ER once during this my BP was elevated 70 points above my normal. 159/100. Could have been from pain but... The did a CT with constrast bad reaction even with pretreatment but still. The steroids did help the belly pain though. So how do you find a NET doc? Afrin, my endo and internist are supposed to be talking but I am not taking any chances. My ChA was 155 but norepinephrine was 1449 and dopamine was 42. Neoron specific enolase was 11 I think. Any help with this is deeply appreciated:)
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Re: The Carcinoid Syndrome - The Differencial Diagnosis to Systemic Mastocytosis - Know the competition!
Reply #11 - 12/11/12 at 05:56:29
 
Hi Gumby, there is one other possibility for you to think about. I read your Intro, and see that you have been diagnosed with EDS (Hypermobility). Do you also have POTS? There is a small group of us with this Triad of medical issues... EDS, POTS, and Mast Cell Disease. The POTS is a particular type known as Hyperadnergic POTS, and one of the findings with this is high levels of Norepinephrine (NE). My last NE results was 1001. I do not have a Pheo, nor do the others in this POTS group. You might want to read this paper; http://hyper.ahajournals.org/content/45/3/385.full

I hope everything goes well for you. Some test results can be frightening, but I think it is important to realize there can be more than one reason for the results of many tests.

Gail
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Re: The Carcinoid Syndrome - The Differencial Diagnosis to Systemic Mastocytosis - Know the competition!
Reply #12 - 12/12/12 at 01:50:42
 
Hi Gail. The hyper POTS does not sound like me. Wish it did as it sounds less scary.  Lisa, I spoke with my internist and she wants to send me to Mayo, Cleveland, clinics or Indiana University med center ( all have NET diagnosis capabilities ) ASAP. She said I will go to which everyone can get me in first. She wants me to do an inpatient work- up. Afrin is at a conference & they have yet to talk but are scheduled to do so this afternoon. She already told me that ruling out a NET is not negotiable and she is highly suspicious. My fist appoint with her was last Thurs. after I saw Afrin and she was leaning toward ruling out  a NET even before she saw my blood work. My symptoms seem to be progressing rather rapidly now. Thanks for the support.
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Re: The Carcinoid Syndrome - The Differencial Diagnosis to Systemic Mastocytosis - Know the competition!
Reply #13 - 12/12/12 at 02:37:53
 
Gumby, I fully agree with your doctor!!  You must rule out the Carcinoid first for your markers reinforce that this is the direction you need to go.   Masto and Carcinoid so overlap that it´s not even funny!  But the problem is that one is a known cancer whereas if you had aggressive masto everybody would have known it by now!  So it is only WISE to go in the direction of the more dangerous disease and if that is ruled out then you come back into the direction of masto.   This is what I had to do!   Some of us have NO CHOICE and MUST go in this direction.   Its scary as all get out but it must be face since it poses the greater threat to your life.  

So, as much as you´d like to rest in Dr. Afrin´s care, for your safety, you really need to see specialists in Carcinoid syndrome.    Dr. Richard Warner is one of the US´leading authorities on these tumors.  He openly admits as to how challenging they are to diagnose.   He has founded the Carcinoid Cancer Foundation in NYC and I´ve had a chance to speak with him a couple of times and he´s an excellent doctor.   He knows a bit about masto and the competition between the two syndromes and how they overlap.   If I had to go anywhere, I don´t know that I´d got to Cleveland Clinic or Mayo.  They are good, but I´d prefer going to an authority himself and your major centers for Carcinoid tumors and NETs are in NYC with Dr. Warner, New Orleans with a center there and also in California.   Mayo and Cleveland do have specialists but if I had to fork over I´d go right to the top!!!!!!  


Here are some of the US authorities in Carcinoids


Lowell Anthony M.D.
Kenner Regional Medical Center
200 West Esplanada Ave., Suite 500
Kenner, LA 70065  USA
              For appointments call Pam 504-472-2750

Larry K. Kvols, M.D.
Professor, Department of Interdisciplinary Oncology, Clinical Division
H. Lee Moffitt Cancer Center & Research Institute
12902 Magnolia Drive
Tampa, Florida 33612-9497
For Appointments: 800-456-3434 ext 3980,
     888-860-2778, Fax: 813-979-6229
Specialty:  Medical Oncology

Thomas O’Dorisio, M.D.
Professor, Department of Internal Medicine
Division of Endocrinology and Metabolism University of Iowa
Endocrinology 3E 17 VA Medical Center
Iowa City, IA 52246
Specialty:  Endocrinology

Rodney F. Pommier, M.D.
Associate Professor of Surgery, Division of  General Surgery, Section of Surgical Oncology
Oregon Health Sciences University School of Medicine
3181 Sam Jackson Park Road L223A
Portland, Oregon 97201-3098
Tel:  503-494-5501   Fax:  503-494-7573
Specialty:  Surgical Oncology
Email: pommierr@ohsu.edu

Richard R. P. Warner, M.D.
The Mount Sinai Hospital and School of Medicine
Department of Medicine
is pleased to announce
Richard R.P. Warner, M.D.
has joined the full-time faculty as Professor of Medicine
with his focus of activity entirely devoted to
clinical practice, teaching and development of a
Center for Carcinoid and related Neuroendocrine Tumors.
New Practice Location, Effective January 1, 2008:
5 East 98th Street, 11th Floor
(between Madison and 5th Avenues)
New York, NY  10029
Telephone:  212-241-4299
Fax:  212-426-5099

Edward Wolin, M.D.
Associate Clinical Director Cedars-Sinai Comprehensive Care Center
8700 Beverly Blvd.
Los Angeles, CA 90048, USA
Tel: 310-423-0709 or toll free at 866-423-8030
Specialty:  Medical Oncology

Eugene A. Woltering MD FACS
The James D. Rives Professor of Surgery and Neurosciences
Chief, Sections of Surgical Oncology and Endocrine Surgery
Director of Surgical Research
LSUHSC Department of Surgery
New Orleans LA 70112
504-884-3555-cell
Clinic address:
Kenner Regional Medical Center
200 West Esplanade Ave, Suite 200
Kenner La 70065
504-464-8500- clinic appointments
504-464-8525-clinic fax
1-866-91-ZEBRA  (1-866-919-3272)

Anthony P. Heaney, MD --- He has moved to UCLA and I need to get his new info, sorry.
Cedars-Sinai Medical Center
8700 Beverly Boulevard
Los Angeles, California, 90048
Ph: 310-423-4774
FAX:  310-423-2819
Ph:  310-423-2830
Ph:  310-423-6648 laboratory



Also, I would encourage you to get on the Carcinoid Cancer Foundation´s website as well as Susan Anderson´s website for patients.   These are both excellent sources of information!   http://www.carcinoidinfo.info/


I hope this helps!!!

Lisa

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Don´t forget, there is so much more to life than being sick!
 
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Re: The Carcinoid Syndrome - The Differencial Diagnosis to Systemic Mastocytosis - Know the competition!
Reply #14 - 12/12/12 at 05:04:02
 
Hey Gumby. Drs are always suspicious of tumors when one has the type of results you have, as they should be. However, you may want to remember the POTS paper in the event the tests for tumors are negative. Most Drs will be unable to explain the high NE unless a tumor is found.

Your history of EDS is what caused me to consider POTS. I don't have all the POTS symptoms mentioned myself. I think we present differently due to the underlying Mast Cell issue.

Good Luck.  Gail
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