Hi my 32 year old husband was diagnosed in December with a 1.6cm pituitary tumor. Since then our Urologist referred us to a brain surgeon and he referred us to the Endocrinologist who was gonna promptly put him on bromocriptine. And I had read up on that drug and the side effects didn't sound good so we wanted it to be surgically removed. So we told her we had to think about it first. She could hardly believe we didn't want the drug. She also said he could be having to take the drug all his life (which is something we DONT want if we can help it). And she said it would SHRINK the tumor. Not take it all away. So ya that is our story. Oh and I should mention that we are trying to conceive our first baby so that makes me even more scared about him having to take drugs.... So does anyone have any ideas of where to go from here?? IS there a surgeon that would operate?? Another thing about the Endocrinologist is that there were only posters and stuff on the walls on diabetes and nothing on pituitary tumors... ok THANKS for your in put...
You should follow your instincts and go to a pituitary center.
You need a neuro endo. Not just any surgeon, even a neuro-surgeon will do. You need an experienced pituitary surgeon.
Did the doctor do any testing before you were put on the bromo? As the bromo only shrinks one type of tumor - a prolactinoma.
Your husband's tumor is already a macro-adenoma. So it puts in where treatment needs to be done promptly, and in some cases, medication IS the correct first step but you have to know the TYPE of tumor first.
As for the safety of the medication, bromo is the old med (I took it) and then there is a newer on dostinex which also has a warning for high doses - but pit tumors don't require high doses (it is also a med for parkinson's). You can speak to a pharmacist about if the meds would interfere with his fertility or pass through etc.
I had a couple of different pit tumor types - it does pay to get copies of all tests, as well as MRI reports.
Thanks so much for replying. He did get an MRI done and they said that it was a prolactinoma type. So then you say that taking bromocriptine is the correct first step?? And what would be the steps after that? Another thing I thot of if he takes the drug would it ever shrink it enough that they couldn't do surgery but he would still have to be on the drug all his life?? You mentioned that you took bromocriptin are you still on it?? How did it affect you? I understand that it will affect different people differently but I would like to hear of someone who has experience with it... And he hasn't started the bromo yet cuz we just don't know what we should do. Hope to hear back from you.
You cannot - NOT - tell the type from the MRI. It is just not possible. So unless you are telling me he got a boatload of lab work, I know I am not a doctor, but I am not going to buy it and I urge you to get a second opinion from a competent pituitary endocrinologist.
Prolactinomas are the most common, but larger tumors do tend to be non-functioning, but even that can be a bit complex as the mass effect symptoms can cause hormones can go off - either up or down.
My docs did not take me seriously which is why I try to help others. I was only on bromo for a month to *dry me up* as my doc felt that my bilateral full lactation was simply not possible with my small tumor (he read my report as 1mm, it was 5-6mm) and my prolactin levels being only barely above normal.
IF you do have an established prolactinoma, then the protocol (if you read up) is to try one or both of the medications first to control the tumor and shrink it as you want to avoid surgery. Not that the surgery is bad per se - had it myself and it was pretty easy (if you have an excellent surgeon!) but you do risk losing other hormones and surgery always has risks anyway with anesthesia.
But an MRI is only 20% or less of the determination of treatment protocol - you need more testing. Blood and urine and maybe even saliva, stim tests and all sorts of stuff is needed. There is just no one test.
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