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...

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Prolactinoma hasn't shrunk after cabergoline.HELP!

deleted_user
deleted_user
So In Aug 2011 i was diagnosed with prolactinoma. It was found when i did not get periods for about 2 years after stopping birth control (progesterone only- mini pill) . After the MRi they found a growth about 1cm all around.

I was put on cabergoline. .25 twice a week. I have been on it for about 9 months. I got an MRI 3 weeks ago... and turns out it hasn't shurk at all :(

The doctor now tells me that the radiologist said that it could be a cyst. A cyst would also cause my prolactin to be elevated... but cabergoline regulated my prolactin which is meant for prolactinoma only.

My endocronologyst said the only way of knowing what it is, is by doing another MRi in about 7 months. But i already have been on this pill for 9 months so why didn't it shrink?? Now we dont know what to do...Im In my mid 20s and i hope to start a family some day soon.So this is stressful..

WOuld increasing my dose help??Does anyone take more than .25 twice a week? or has your doctor increased your dose?

ANy advice/ input helps
Iris2012
Iris2012
My understanding is that carbergoline shrinks tumors in only some cases. In many cases, it doesn't shrink the tumor at all but it does regulate the prolactin, and you need to stay on the drugs indefinitely. You can go up much higher on dosage if you tolerate the side effects. I take 1 mg twice a week, and might go up more, because my tumor is resistant to the meds.

If your prolactin is in the normal range, you should be able to get pregnant. You just need to stay on the meds.

Be sure you're seeing a doctor with experience in prolatinomas--a reproductive endocrinologist or an endocrinologist that specializes in pituitary tumors. If he's telling you that the carbergoline should definitely shrink the tumor...that doesn't sound right to me....
deleted_user
deleted_user
"But i already have been on this pill for 9 months so why didn't it shrink??"

If it is a cyst, it will not be affected by cabergoline, and it is not uncommon for this to happen with tumors too. If you poke around this foruma bit you will find many other people who are resistant to one drug or another.
freeranger
freeranger
Cabergoline is usually very effective at shrinking the tumor but only until the Prolactin producing elemnt has been taken care off. If the tumor or cyst is hard tissue then it is possible that it will not shrink much. In my case it has gone from a 5cm tumoir to a 2.5cm tumor but now the shrinking is slowing. The main point is that the symptons and problem areas IE (Hormonal problems) are halted. I started off at 0.5 per week but am now on 0.25 a week. This has been almost 2 years. Get a second opinion. Go the best. Sometimes going to a major medical center in a large metro area for a second opinion is a good thing and my endro encouraged this. I don't know where you are located. For me Mass Gen in Boston was a great option...
deleted_user
deleted_user
Thank you all for your input. Its difficult because my doctor doesnt know if its a cyst or prolactinoma. Im left confused as to what i should do. I feel that after 9 months it should have shrunk. SInce it hasnt.. i dont think taking a higher dose will make a difference. I tried taking a higher dose and im getting migranes every week now :/ so im not going to take a higher dose anymore. Im thinking of just finding a different doctor to see what they say.

Is it common to not react to medicine?? and after how long did you guys get checked and saw results in size?
Iris2012
Iris2012
I definitely encourage you to get a 2nd opinion. Where are you located? There are some great hospitals that specialize in prolactinomas.

Remember that the meds don't shrink all tumors though. If the meds are regulating your prolactin levels..well, that's the important part! You just might need to stay on the meds forever, but if you can get your prolactin levels into the normal range, then you should be able to get normal periods and conceive.

I've been told to get MRIs every 1-2 years, since changes in size occur gradually. My docs have always focused on my prolactin levels, and recommend the MRIs just to make sure it's not growing.
deleted_user
deleted_user
Thank you Iris. That makes sense...and makes me feel better :) i didnt think of it that way. But you are right, because my levels are normal and im getting periods normal so it shouldn't be an issue. I think my doctors only concern was if it grew during pregnancy due to high levels of estrogen. (or whatever the hormone is that increases during pregnancy) I am in the LA area closer to Pasadena.
deleted_user
deleted_user
My tumor is 4mm and when on Bromo I've always been at 2.5 mg until now (prolactin not going down much after 2 months so he doubled it to 5mg). When I was on Dostenex I was on it 2x a week but don't remember the mg but it was normal start out mg. I would ask about increasing it and looking at the blood results again.
deleted_user
deleted_user
Oh and if you become pregnant my ob told me that I had to stop meds as soon as I knew I was pregnant. So check with your ob too.
Iris2012
Iris2012
Glad to be of help!
I think UCLA is supposed to have a top-notch pituitary center. I haven't been there, but it came up during my search awhile ago for specialists. It might be worth getting a 2nd opinion there if you think you need one.