Lisa
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Hi Bob!!
It's really hard to interpret what some exam results mean for sometimes they aren't worded properly. And yest, that sounds bad, but don't get freaked out yet, my friend, for it may not be so.
I hope that Tiago will pop in here for I'm sure he'll have more to say about this. First of all, you need your doctor's opinion as to this, for it's not just enough to find one exam and build the diagnosis on that, you need the whole picture.
Yes, mast cells are known to invade the spleen. I can understand why they would say "malignant" too, for mastocytosis, the osis ending of that word means the invasion of the mast cells within a tissue. Mast cells will accumulate within tissues within two forms, that of being a hyperplasia and that of being the clonal, neoplastic mast cell. Mast cells are present throughout our bodies, we need them and we can't live without them. But as they say, too much of a good thing.....! Mast cells are known to increase in a specific location where there is an infection or inflammation or a cut, etc. They need to be there. However, when this is abnormal they will be seen in two forms, that of a mast cell hyperplasia, which are normal, healthy cells, and that of mastocytosis which are neoplastic, clonal cells. These neoplastic cells have a defect in that they are clonal (copies) and that they also don't die off when they should, which is what causes the invasion of the tissues.
Because the pancreas is an organ that has to do with the blood reproduction, etc, the abnormal, neoplastic mast cells have been known to accumulate there. These cells are abnormal in that they clump together. When they are normal they are loose and individual, they don't clump together. So, since these abnormal cells are considered a neoplasm, I can see that some doctors would give them the same name they would if it were a cancer. Not understanding that these abnormal clonal clusters of mast cells are not considered a "cancer" until the disease becomes truly aggressive, the doctors, using what is considered correct vocabulary in this situation end up freaking out anybody who doesn't truly understand the disease!!!
For example, mastocytosis is known to also cause aggregates (clumps) of normal lymphocytes. Well, the doctors who don't know this get all concerned when they see that these lymphocytes have clumped together for this clumping indicates lymphoma - a malignant blood cancer. Yet, in the testing of the lymphocytes, by seeing that they are normal healthy lymphocytes this would be called lymphocytosis. You see, the same ending of OSIS here and yes, the same kind of invasion of the lymphocytes of the tissues, but it's not considered "malignant"! Why? because although they are clumped together, the are normal healthy cells. Yet, when the doctors who don't understand that although the mast cell can be abnormal, and appears to be "malignant" this doesn't mean that the mastocytosis is indeed malignant independent of where it is found within the body.
Do you understand what I'm trying to say? I hope so.
Bob, your doctors need to speak with one of the masto authorities about this finding. They need to have help to determine whether or not the disease has gone from indolent into a smouldering stage. This is very important for depending upon what the situation is, you may need other treatments. They need to correctly judge what you situation is for if they anticipate the situation thinking that it's worse than it really is, they can put you through treatments that may actually cause you harm, not knowing that they are instead taking the wrong steps for you right now.
If I were you, Bob, if you could, I'd get myself to Boston or Virginia and see one of those authorities myself!! They can best judge your situation.
Lisa
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