In 1997 I had a prolactinoma pituitary tumor removed. The tumor was hard in nature an had to be "chipped" away. Surgery lasted 8 hours, versus the 3.5 they anticipated. Due to the texture of the tumor, the surgeon was concerned the tumor could have been cancerous. Fortunately, it wasn't. My pre-surgery prolactin level was only 37. I was told for the size of the tumor my prolactin level should have been much higher.
In 2005 the main sympton returned (my right breast lactating). Since 2005 I have had yearly extensive blood work completed, each has showed my prolactin levels are within the normal range. I've had two MRI's completed and there seems to be a difference of opinion if there is something new on the pituitary gland or if it may be scar tissue. Since my prolactin levels are normal the neuro surgeon dismisses the idea that the pituitary tumor could have returned, by stating you cannot have a pituitary prolactinoma without elevated prolactin levels.
I've asked, to no avail, could it be possible that the reason my prolactin levels are not elevated is because this time whatever is on the pituitary gland may not be a prolactinoma tumor but something else. The surgeon only told me that the symptoms could be the early signs of something forthcoming and said the only way to know for sure if there is something "new" on the pituitary glad would be to do surgery.
I am concerned that this time the tumor may be cancerous and by doing nothing could cause me problems in the long run. My yearly check up will be within the next 60-days, do you suggest I do something more proactive now, and if so, what would you suggest?
It sounds like a very challenging problem for you and the physicians providing care to you. Congratulations for weathering the storm. Without having all of the numerous records including lab trends and MRI films in front of me, I think the heart of the matter is that you would like some confirmation that others agree with the strategy. I know that it is very hard for patients to understand in complex situations like this that this is truly where the "art of medicine" presents as opposed to "black and white" "either or"
I think your doctor is looking at the liklihood of this being recurrent tumor based upon his analysis of the MRI, your symptoms and his knowledge of the behavior of benign prolactinoma. I would suggest that you seek a second opinion from the regional facility that has the largest experience with adult neurologic tumor. They will have and expert team of neurosurgeons and neuroradiologist to provide "a second pair of eyes". I'm sure that your current doctor would not mind if you present that option respectfully. I always encourage my patients to seek second opinions if there is any controversy especially when there are two ways to manage a problem, as there often is in complex situations.
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