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 was just diagnosed with a 12 x 10 x 11 mm macroprolactinoma. My prolactin level was 426 at the end of January. I am- it seems- like a lot of younger women on here (I'm 30): I stopped taking oral contraceptives and never had a return of my period. I was doing the "wait and see" until I developed galactorrhea and made an appt with my PCP at the end of January. A battery of labs and an MRI later, here I am.
I have my first appt with endocrine on Tuesday. Can anyone tell me what questions I should ask? How can I prepare?
I have my first appt with endocrine on Tuesday. Can anyone tell me what questions I should ask? How can I prepare?
What you ask depends on what's important to you.
For me, the first step is to know what we're dealing with. I can't get an MRI, so I'll have a CT on Monday. And I'll go in for computerized kinesthesiology in a couple of weeks. In that diagnostic test, they actually ask your body what's driving the high prolactin. I tend to trust my body more than what a test says.
If my body does something, I feel there's a reason for it - either it's trying to fix something, prevent a problem or tell me something. But that's just me so my approach is a bit different.
I want to try alternative treatments first, so I asked my doctor about that. Typically, MD's don't have a lot of knowledge in this area which is fine. I just want my acupuncturist and/or homeopathic doctor to be able to call her to learn more about what's going on so they can treat me.
If you have symptoms, resolution is likely at the top of your list. I don't have symptoms so I just want to start slow - try alternative medicine first and if I need meds, start slowly.
You may ask about treatment options and also devise a plan so that you aren't up all night worrying! What meds will she try first? How long will you need to be on them before they'll test to see if it's working? What if it doesn't work? How long might you need to take them before you can take a break? How often will you have blood tests/MRI's/etc.?
From what I've heard, Cabergoline has fewer side effects and it's effective in 80% of people.
Most of my questions emerged from the research I did. You might wander around the web, read things on boards but also things in medical journals and such.
Remember that YOU get to decide what avenues you'll take. Doctors can provide you with options and information but you get to decide.
If they do suggest surgery, I would suggest that you interview doctors. There are neuro-endocrinologists that specialize in this sort of surgery and can usually be found at Universities. Ask how long they've been in practice, how many surgeries they've done, if they agree that surgery is the best option, what complications could arise, if they feel the tumor may grow back and how fast - necessitating another surgery. : (
From what I've read (and I'm not a dr), it's rare they do surgery for this sort of thing because the meds usually work so brilliantly.
Best of luck to you. Let us know how it goes.