Prolactinoma Support Group

Hi a macro is a tumor over half an inch...do you have any other symptoms? Are your doctors telling you that there is a good chance of you getting pregnant? My tumor is a little over half an inch but my doc's say it is not compromising my optic nerve however are contemplating surgeory to help my chances of getting pregnant. I do know that your tumor has a good chance of growing if you get pregnant- I have not heard that removing the tumor will lessen your chances of getting pregnant, but just the opposite. Has any one else heard this? If so maybe it would be best for me to stop considering surgery.I hope you choose to do whatever is best for you but if it is touching your optic nerve then please get another opinion about how surgery will effect your chances of getting pregnant. Best wishes and I will keep you in my prayers!

Yes, the surgeon that I saw, told me there is a good chance that I would not be able to have kids after having the surgery, which is why I have opted so far to not have the surgery. My surgeon suggested if I wanted to have kids that I do that before the tumour is removed. That is why I assumed that everything would be fine, then my new endocrinologist is telling me that I could have my vision compromised.

It was really a very upsetting day for me. I got married in February, and having been trying to get pregnant since then, without any success. My hormone levels aside from my prolactin have always been normal. My prolactin levels are slightly elevated. I have no symptoms that this thing is there at all. The only proof of it is the MRI's. I'm very frustrated right now. I was also told there are a number of risks to the surgery that I am not prepared to take. So I don't know what I will do. I've not been tried on any meds, so really I would like to try one of the meds. I did have a very brief trial of Bromocriptine, but I only took it for a couple of months. I was sick from it, so didn't really give it a chance. At this point I'd be willing to put up with the side effects if it works.

I have wanted children since a very young age, and this recent news has devestated me. I am seeing the edno specialist in 6 weeks, and I am doing another set of bloodwork this coming week. The endo specialist is going to speak with someone specializinig in the pituitary gland to find out if I will for sure have a problem being pregnant with the tumour.

I guess I will find out in 6 weeks time!

Jodee i feel your pain! while i'm not married yet i do want to have children some day as well. I don't have a macro tumour but a micro one so i can't really give you any advice on that. What i can say though is you should really try the medication to see if that works at first and if you can't stand the side effects there's always cabergoline... it has side effects too not too sure how those go as i'm on bromo. Make a list of all the questions you need to ask the endo. I do believe there is still hope for you before the surgery and nothing beats prayer. I will be praying for you and i know its not easy to not worry! I pray for a great outcome!

Dear Jodee,

As I have said to many other posters here, please ask your endo - why is she not treating you with cabergoline? It is a far more modern and improved drug than bromocriptine, with far less side effects. If you have a prolactinoma, the cabergoline shrinks the tumour. Perhaps seek another opinion from a more experienced endocrinologist? I am concerned a little that your endo is wanting to consult with someone who specialises in the pituitary gland before she gives you definite advice! SHE is supposed to be the person who specialises in the pituitary! And to tell you whilst pregnant that you could lose your vision? PLEASE get a referral to someone at the top of the field of Endocrinology! You deserve that! I've not heard that removal of the tumour can interfere with fertility. I would have thought, on the contrary. But I'm unsure.

It is natural that the pituitary gland swells during pregnancy, but this is monitored by the physician.

God bless you!

When they found my tumor it was 10mm. That was 13 years ago. I went on Bromocriptine first it did not work for me. I then went on dostinex (cabergoline) and my tumor shrunk rather fast. I was told that we had to have my levels (prolactine -below 20) normal before I could get pregnant. When I did get pregnant my tumor was not showing on the MRI and level had been normal for about a year. Please note I had twins. When I was 7 weeks pregnant they had me go off the dostinex. Remember this was twins so my hormone where high. (My tumor became very large) By ten weeks I was having migraines at week 20 they put me back on the dostinex and I had healthy boys at 31 weeks. Please know my geno was in over his head. He did not believe how bad my head hurt. Once I changed to a high risk geno things went much better for my. (at week 20) Also if you have extreme thirst during your pregnancy that is a condition caused by the tumor and there is medication.

What I have heard you do not want to remove the tumor because it can cause damage to your other hormones. I would think the best thing you could do is go on the medication and get your tumor smaller before getting pregnant. Because yes my tumor did grow during the pregnancy. And I am concerned that the tumor is touching your optic nerve that does not give you much room to grow.

Just a note -High prolactine levels is telling your body that it is already pregnant. Most of the ladies here say that their specialist recommend Bromo if your are trying to get pregnant.

Hope that was not too much information. It was well worth it for me. Just be sure you have a good doctor that listens to you.

Hello, well said Apple123 You have very good insight! Yes Jodee please get another opinion your pit gland is part of the endochrine system so an endo IS the specialist! As far as meds go both meds have worked on lowering my prolactin levels but my tumor has not really shrunk it is growing, that said I am a little strange when it comes to medicine. The dostinex has fewer side effects and is easier to handle plus you only take it 2x a week vs every day. Before your next appointment please do some research so you can go armed with information and questions. The best of luck. I am praying for you!

Hi Jodee...I'd have to echo much of what others have said. Why not ask about treatment with cabergoline. I've also heard that surgery should be the last resort as there is a good chance that it can mess with other hormones and it's possible that even tho it appears the entire tumor is gone (with surgery) that it can actually come back, so treatment with bromocriptin and cabergoline are preferred, assuming that works for each individual. Bromocriptin and cabergoline both worked for me at reducing my levels and shrinking my tumor, but my body didn't handle bromo very well so I prefer cabergoline, as there are less side effects. my best to you!

Wow, thank you so much for all of your input. I am taking everything into consideration. I would really like to try medication, and I am hoping that is what she is going to suggest at my next appointment. She did ask me if I had ever been on the cabergoline, I have not, and am more than willing to give it a try.

I was somewhat skeptical when she suggested that she needed to consult with colleagues regarding the pituitary and pregnancy. She is supposed to be the best in my area.

I am going to be doing some bloodwork and a 24 hours urine to test the cortisol, I was just hoping I would see her again sooner, 6 weeks is a long time to wait. Especially if I am going to try meds, I would like to start as soon as possible. In the 5 years I've known its there, it hasn't changed, so I'm hoping that maybe medication could help it. I think the reason why surgery was the first suggestion was because I saw a surgeon first. It was my surgeon that recommended I be followed by an endo specialist. I am on my 2nd endo person. The first had said his office would call me for follow up but they never did. So I asked my doctor for another referral to a different doctor.

I'm really glad I found this site, its great to hear stories from people that are going through the same thing that I am.

Thank you to all who responded, and all the thoughts and prayers are truly appreciated!!

Hi Jodee. I agree with them, try to find another endo who knows what his job is! My endocrinologist has the same sickness as ours and she has 3 kids already. She never undergone operation but only medical treatment. I'm under medication too, and i am taking bromocriptine. Luckily, my body can tolerate the side effects of the medicine. I am taking the highest dose for a month, that is 4 tablets a day (total of 10mg/day). The other day, i already got the result of my second prolactin test and by God's grace, it went low drastically, from 480 to 2.5. I also feel like my tumor shrunk already because my vision got better. I will have my visual field test next month. My endoc told me if the result of my VFT has improved, that means my tumor got smaller because it's not causing any compression to my optic nerves at all. Then MRI will follow.

I agree with their suggestions, try medications and be patient with the side effects. It is really important to discuss with your endo of your plan to get pregnant.

Hope for the best!

Yes, I did tell her that I have been trying to get pregnant since February. She instructed me to stop trying. She said because of the size and the fact that it is touching my optic nerve I could lose vision. She didn't say if she meant in one or both eyes. She wants me to stop trying until I see her June 5th. For thats a long time to wait. Really I was just go on as I have been but then became a little nervous, she scared me with the loss of vision stuff.

I really am going to push for the meds when I see her next though!!