My name is Kim. I'm 19 and was diagnosed with a Prolactinoma when I was 16. In 2009 it was 6mm and they found it because of my lack of periods.
In 2011 I had another MRI because I was lactating - the tumor had grown to 9mm. The endocrinologist sent me to a neurologist who said that it was possible that it was just a cyst and not a tumor and had no relation to the elevated prolactin and lactation. I went back to the endocrinologist who put me on Cabergoline for one month. In that month my prolactin levels were back to normal and she took me off the medication.
Well about 2 months ago I had another MRI and my tumor is now at 1cm - a macroadenoma. I was told by the endocrinologist that my prolactin levels were a little high but should be higher based on the size of the tumor. They checked to see if it was secreting another hormone but it wasn't. They then sent me to a neurosurgen due to the 'rapid growth' (as they put it). The neurosurgen said that it might not be a tumor and that it could be a cyst or a tumor within a cyst. WHAT?! He then told me that I could do the surgery if I wanted or I could choose medication for a longer period of time. I mentioned the fact that I was going to be kicked of my Grandparents medicaid at 21 and he said "Oh, that changes things."
I'm on Medicaid (under my Grandparents) and Medicaid cuts you off at 21.. That's November 2013 for me..
Now I have to decide if I want medication for who knows how many years, or, to just get the stupid surgery. I have no clue what I'm doing. I'm 19 years old! I just don't know!!
It does not sound like you have had good doctors IMHO... even if it is a cyst or a tumor, the size is getting to a point where treatment is needed and it sounds like the medications you are on (and SHOULD STAY ON) are not helping.
Your endo is not skilled - the medication has to be there to keep the hormone at bay - so to let you get to a normal level and then let the level go back up??? What is the purpose of that? You have to stay on the medication basically forever. The dose may change, but you have to suppress.
I can understand that you don't know... surgery also carries some risk - in that you will lose other hormones - and that means other medications. I would hope that you can find a good neuro-endo (a PITUITARY doctor) to help you. Since you have insurance issues, I would see if you can get into the NIH (clinical trials.gov) and see what you can get there as far as treatment and help.
Cysts can push on the pituitary and still cause hormone issues - so no matter which lesion it is = it still needs to be treated.
Thanks so much for your comment. I'm glad I got a reply so quickly.
I called my endocrinologist and found out that they can't get me back in to see them until November! I know that due to my insurance issues - I can't afford to wait that long. I ended up calling the neurosurgeon and they gave me a surgery date for Aug. 16
The nurse told me he has done this surgery many times and that makes me feel a little better.. but now I'm just scared. I'm doing a lot more research on the surgery and recovery and everything but.. just... AHHH it's driving me nuts!
Sorry for all the ranting... I don't mean to complain or anything - but I really don't have much support around my small town.
You can always come back here for support. And if you have any questions - at least a couple of us active people have had the surgery.
It does seem a bit scary - but I have had 12 surgeries and my pit surgery was one of my easiest to be sure. It will look like you have not had surgery! But you have, so do take it easy after surgery. Read up on the posts here and come up with any questions. Make sure you ask your surgeon any questions you have (write them down) so you can be re-assured. The office should be able to help you.
Thanks so much for your advice! You've helped in more ways than one for sure! I'm going to search the forums for questions and answers about the surgery and see if I can come up with a few things to ask the surgeon. I've gotta just keep focused and hang in there - like you said.
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