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Lisa
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Hi Kleusey,
I'm sorry I haven't stepped in here earlier. I tried but something else demanded my attention and I'm only now stepping in.
Kleusey, I wrote a big explanation of Masto vs Carcinoid to Ccc earlier and it most definitely applies to your case too.
It is not at all unusual for systemic masto patients to have to go through a carcinoid investigation. It takes on average a carcinoid patient 9 years to get a diagnosis due to how slowly the tumors grow and how gradually the symptoms come on. However, most carcinoid patients, by the time they show flushing, are in already a bad spot for it could indicate that their tumor has mestastized to the liver where the hormones are no longer being filtered by the liver and are dumping directly into the blood stream. However, some patients have their tumors in spots where they bypass the liver anyway and this is why they will flush. This flushing is the telltale sign for both masto and carcinoid patients and this is why so much confusion is caused. However, a bad reaction to epinephrine very well could indicate masto for about 20 or so years ago before they had a some good biomarkers for both diseases this was how they would differentiate between patients -they would provoke the flush with a cup of wine and then administer epinephrine. If the flush disappeared, it was masto, if the patient got sicker, it was carcinoid! Epinephrine can be deadly to a masto patient, which is why the ER should never administer epinephrine in any case of doubt as to the source for the flush!!
Ramaona's right, it could be Kouris syndrome, however, you MUST be fully investigated BY AN EXPERT for carcinoid. This is not a tumor which any old oncologist can track down for they can be extremely difficult to diagnose. Masto patients and carcinoid patients share some of the same markers like serotonin and histamine markers and yet carcinoid has some markers that a masto patient will not and vice versa. Yet a common oncologist won't know this. So, I strongly recommend that you seek out an oncologist who is a specialist in these tumors - not some Gastro, but a real SPECIALIST in Neuroendocrine tumors for those thyroid issues you are having could be a NET behind them. Without a specialist in these tumors, you have not had a proper workup. And I must say that you should never be the one to rule out any disease, your doctors should have done this for you. It is well known amongst the specialists in carcinoid that a normal chromogranin or normal serotonin test does not always rule out NETs for depending upon the location and the type, you won't have those positive markers. the urine serotonin marker 5-HIAA is KNOWN to have only 50% sensitivity. This means that 50% of the time it's going to be negative. And with Chromogranin, some masto patients are known to have elevated levels too.
So, you must go see a carcinoid specialist and NOT a masto specialist. I will go against Ramona's recommendation here for of the two diseases Carcinoid takes precidence especially when you've got a positive marker showing it. Of the two diseases Carcinoid is the more dangers and it's the more common, The chances are higher that this is what you have and therefore it only makes sense to go in that direction FIRST and then rule it out and after it's been fully and properly investigated and ruled out by the doctor, then can you move in direction of masto.
As to the likelihood of having both, masto AND carcinoid, it's just so ridiculously unlikely that no doctor will take it seriously. My explanation to Ccc will explain to you why. Could it happen? Possibly, but to date it has not been reported to have occurred as yet. So, let's not entertain that possibility as yet. I think that in Ccc's case, she can consider it since they have already found the carcinoid. I'm not saying she has it, I'm only saying that since the one has indeed been found, then if she can get the proper attention and fully deal with those carcinoids she does have and there still remains issues, a mast cell disorder could be considered as a possibility, but since she's not got everything fully dealt with as far as the carcinoids go, they must still be considered the culprits here - only after they are dealt with can masto be considered if anything is left over for again, the chances are so very, very slim of having them both together that no doctor will seriously consider them both together in the same patient. Mast cell disorders are extremely rare and there are perhaps only 200,000 - 300,000 patients in the entire US, so this tells you how very uncommon a mast cell disorder is. Then to put those very tumors which are the differential diagnosis together with that patient....well, this is why most doctors would just laugh you out the office!
So, in order to keep from having a doctor laugh at you, concentrate only on the one, the carcinoid, get it ruled out and then go securely in the direction of masto this way you won't lose precious time.
Remember, when we patients deal with medical investigations we have priorities as to what we must do in order to protect ourselves: We must take the worst possible threat as the priority and in this case, cancers always win! Seeing that carcinoid is a known cancer and can be deadly, you have no choice but must go in that direction and have a specialist work you up and rule it out. Then, you are free to go after other possibilities. However, one more thing - it is the job of the doctor ruling out the carcinoid to raise other suspicions of differential diagnoses. Once he can raise them, then you need to go in that direction that he's pointed you into, this is the responsible way to deal with these things.
Lisa
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Does bad reaction to epinepherine means not Masto but Carcinoid?? (Read 6412 times)
