Prolactinoma Support Group
A prolactinoma is a benign tumor of the pituitary gland that produces a hormone called prolactin. It is the most common type of pituitary tumor. Symptoms of prolactinoma are caused by too much prolactin in the blood or by pressure of the tumor on surrounding tissues. Prolactin stimulates the breast to produce milk during pregnancy. After delivery of the baby, a mother's...
Hi guys,
So I just had my 6 month mark MRI. I made the huge mistake of going to MyHealthOnline.org to view the results, much of which makes little sense to me with the exception of the words "increase" and "decrease."
I've been on 0.5mg of Cabergoline twice a week since March. My first follow-up MRI back in June showed overall shrinkage of the tumor.
The MRI I just had last Sunday shows the following:
1. Some increase in suprasellar component where the overall dimension is 19mm, up from 16mm back in June. Some greater impingement on the optic chiasm....yet....
2. Exophytic hemorrhagic mass extending into left frontal lobe shows some interval decrease in size, transverse dimension at 3.1cm down from 3.8cm back in June. along with decrease in effacement of frontal horn of left lateral ventricle and some decrease in localized frontal left or right midline shift.
3. No new intracranial lesions delineated, no acute infarcts or acute hemorrhage.
So I don't know what half of this junk really means, but the word "increase" absolutely terrifies me.
Why would one section of this tumor show a 3mm increase while another shows a decrease? Why is ANYTHING increasing if my Prolactin is down. Last checked, it was at 2.5 (in August I believe).
Sometimes I wish patients wouldn't have access to such results online because someone who isn't used to reading MRI results can really get freaked.
Long story short, I called my neurosurgeon and asked him to view the results and call me. I'm not meeting with him for 3 weeks and I can't wait that long to discuss it.
Okay, so the difference between 16mm ad 19mm is about the difference between the size of a dime and the size of a penny, but I don't understand how anything could show an increase. These results make it sound like this tumor is so much more complicated than I originally thought, even considering my doctor was able to surgically remove 80% of it.
Do you think my doctor may simply increase my Cabergoline dosage? I wonder if this is a real cause for alarm...? Kind of scared to be honest.
I know this may sound weird, but I probably could have benefited from some mental health therapy after this ordeal. I feel like a ticking time bomb...
So I just had my 6 month mark MRI. I made the huge mistake of going to MyHealthOnline.org to view the results, much of which makes little sense to me with the exception of the words "increase" and "decrease."
I've been on 0.5mg of Cabergoline twice a week since March. My first follow-up MRI back in June showed overall shrinkage of the tumor.
The MRI I just had last Sunday shows the following:
1. Some increase in suprasellar component where the overall dimension is 19mm, up from 16mm back in June. Some greater impingement on the optic chiasm....yet....
2. Exophytic hemorrhagic mass extending into left frontal lobe shows some interval decrease in size, transverse dimension at 3.1cm down from 3.8cm back in June. along with decrease in effacement of frontal horn of left lateral ventricle and some decrease in localized frontal left or right midline shift.
3. No new intracranial lesions delineated, no acute infarcts or acute hemorrhage.
So I don't know what half of this junk really means, but the word "increase" absolutely terrifies me.
Why would one section of this tumor show a 3mm increase while another shows a decrease? Why is ANYTHING increasing if my Prolactin is down. Last checked, it was at 2.5 (in August I believe).
Sometimes I wish patients wouldn't have access to such results online because someone who isn't used to reading MRI results can really get freaked.
Long story short, I called my neurosurgeon and asked him to view the results and call me. I'm not meeting with him for 3 weeks and I can't wait that long to discuss it.
Okay, so the difference between 16mm ad 19mm is about the difference between the size of a dime and the size of a penny, but I don't understand how anything could show an increase. These results make it sound like this tumor is so much more complicated than I originally thought, even considering my doctor was able to surgically remove 80% of it.
Do you think my doctor may simply increase my Cabergoline dosage? I wonder if this is a real cause for alarm...? Kind of scared to be honest.
I know this may sound weird, but I probably could have benefited from some mental health therapy after this ordeal. I feel like a ticking time bomb...
Asked if increasing Cabergoline would make a difference and he didn't seem to think so but he mentioned he'd check with my endocrinologist anyway.
I don't understand how a portion of a prolactin-secreting tumor can be responsive while another part isn't or doesn't appear to be responsive on an MRI.
Long story short, my neurosurgeon said that it does seem to be improving, but that we'll need to watch the portion around the carotid. If it continues not to respond, reoperation to remove the residual tumor could be recommended.
The thought of going back into the hospital...I can't even really explain it as I've been dealing with such terrible mental stress since March anyway. I can't have my life being invaded by this constantly. How am I ever supposed to live?
Now, I get to sweat this out for another 3 months until my next MRI. Guess I can kiss a happy holiday goodbye. This will be in the back of my mind (figuratively and literally) constantly. Sometimes I hate my life.
I've was diagnosed with an 8 mm prolactinoma 1 year ago and have been fortunately well controlled on cabergoline. In my effort to educate myself about this scary condition, I have read that some tumors and secrete other hormones or be non-secreting. Maybe yours is a combined type tumor??
I hope your next MRI goes well. My endo has kept the cabergoline dose a little higher 1.5 tabs twice weekly and the prolactin basically
So do I. The MRI results were re-clarified by the lab a few days later and they said the increase was very small and that the "hemorrhagic" part shows interval decrease.
One of the issues here is that I made the mistake of volunteering worst case scenario questions to my neurosurgeon who, by legal obligation, could not paint the rosiest picture possible. Had I not asked the question, he would not have responded with something that struck such a fear in my mind. When I spoke with him briefly over the phone, he said that by his estimation, the tumor looks better than it did back in June after my June MRI. My endocrinologist also told me that there is no need to increase my Cab dosage because the tumor is showing reduction. So I don't know. I've struggled with a lot of depression and have a really hard time being positive these days.
I think I'll just keep my mouth shut when I go in for my Oct consultation with my neurosurgeon. I don't want to invite worst case scenario situations to be discussed. I guess my attitude should be that if my neurosurgeon is not very concerned, than I shouldn't be either. I'm the one who called HIM following my last MRI. He didn't call me. Probably didn't see the need. He's probably one of the best doctors I've ever met and specializes in pituitary tumors.
Additional note to self: Take lab person up on their offer to listen to classical music through headphones when inside the MRI machine. For some reason, that last one was so much bloody louder than I remember it previously. My right ear was ringing for the rest of the day afterwards because I only had some foamy earplugs in my ears. Next time, I'm asking for that extra padding on either side of my head to muffle the MRI noises.
My next MRI will be in January, so I'll keep you posted. Hoping it will still look good.
Linda