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...
I'm seventeen and one random night about a month ago my boobs randomly started leaking. They stopped but my mom took me to the doctor and he tested my prolactin. It was 48 with normal kidneys, liver and thyroid. So now I'm waiting to get an MRI in two weeks, and tonight my breasts are leaking again! I am so worried that this is all I can think about. I'm wondering if I could something else besides a prolactinoma because I don't have any headaches or vision changes and my prolactin isn't as high as most people's who I have read about. I'm just wondering if some people on here could try and answer some of my questions because it would bring me a lot of comfort while I'm waiting for my MRI.
-What was your prolactin level during your first blood test before you got diagnosed?
-Did you have surgery or take medication, has this disease seriously impacted your life?
-Why woud my boobs only leak on two occasions and not all the time?
-What is the likelyhood that I'll suffer vision changes or blindness (it's one of my worst fears!)
-Did you have to travel long distances or pay lots of money for your tests? Did you have to miss school or work?
-Is this curable? What is the point of having surgery if the tumor will just grow back? Will I have to deal with this my whole life, should I expect to have to undergo surgery at some point during my life?
-Should I be worried?
Thank you <3 <3
The fact that you are experiencing galactorrhea makes me want to think it is a prolacitnoma as other tumors like a craniopharyngioma don't have this symptom. I am no neurologist, but just my 2 cents from what I've read about secretory tumors. Also, like positive said, hopefully something else is causing your symptoms and your MRI can rule out a prolactinoma.
Anywho, regarding your questions
-What was your prolactin level during your first blood test before you got diagnosed? 2K
-Did you have surgery or take medication, has this disease seriously impacted your life? Taking cabergoline, worst side affect is getting dizzy, drowzy, nauseated (only in the beginning and when I increased dose)
-Why woud my boobs only leak on two occasions and not all the time? Our bodies are wierd and all different! I never experienced galactorrhea with PRL at 2k, while some experience it at much lower PRL levels.
-What is the likelyhood that I'll suffer vision changes or blindness (it's one of my worst fears!) Very low if you have a prolactinoma that is diagnosed early. If you have a prolactinoma, it is good that you aren't having any headaches (caused by it being really big). You suffer vision change because the tumor gets so big it compressed part of your optic nerve . I was half blind in my left eye 10 months ago, with 20/70 vision. Thanks to cabergoline and my lifestyle changes, I am now 20/20!
-Did you have to travel long distances or pay lots of money for your tests? Did you have to miss school or work? Originally I went to a neurologist 4 hours away, but did so because they were the best in a reasonably close location that was covered by insurance.
-Is this curable? What is the point of having surgery if the tumor will just grow back? Will I have to deal with this my whole life, should I expect to have to undergo surgery at some point during my life?
Still struggling to find the answer to this one. From what I've read seems like most people get it to a small size and take routine MRIs to make sure it doesn't grow big again, We very well may have to deal with it for our life. People have surgery as a last resort, i.e. tumor does not shrink in response to cabergoline and/or it gets so big that the patient is nearly blind and is having massive headaches. Hopefully you will never have to go through it!
Best of luck, hope it isn't a prolactinoma but if it is, it is definitely manageable.
10 months after my dx, I never would have thought I would have come to the point where I can see normally again without surgery!
-Should I be worried?