Just been diagnosed with a Pituitary Macroadenoma

[ashurrutia]

I went for an MRI of the brain for headaches, and it showed a nodule in my pituitary gland, they said probable Macroadenoma, the neurologist has ordered some hormone test: Cortisol, Prolactin, and Growth Hormone, and referred me to a Neurosurgeon to see next Tuesday. I am freaking out, I don't want to have surgery, nor do I want to be on hormone replacement for the rest of my life. Apparently this tumours are very common, and are benign for the most part, only in extremely rare case are they malignant. Surgery is usually done endoscopelly through the nose. Risks are damage to the pituitary gland, bleeding, and in extreme cases stroke, thought the incidence is <1%, but it varies depending on the neurosurgeon experience. Frankly if mine doesn't grow I do not want to have surgery, unless my pituitary gland starts to malfunction. I've read some not so good stories of what can go wrong with surgery(Yes, today I've been googling like crazy, I simply couldn't contain myself)

Any support or information will be more than welcome.

[Anxious_gal]

Aw I'm sorry :(
All I can say is you will cope! I know you're scared but if you need the surgery or medications you don't have a choice but to do it x
It'll all work out : ) be glad they have found it and that is is treatable.
You'll be surprised at how well you'll cope! I was beyond terrified of having minor surgery and the worst part of all of it was my own anxiety.

So maybe focous on helping your anxiety, try CBT, positive thinking, meditation n just looking after yourself in general.

[Mipsy]

Hi honey. I'm sorry you have this but I'm glad it's treatable.
My advice would be to chat to your consultant again about surgery and go with his/her advice. Try not to Google in the meantime. Remember a lot of websites are not official and share information which cannot be trusted.
I agree with anxious gal, try some relaxation methods in the meantime.
Let us know how you get on x x

[unsure_about_this]

Hi

I also sorry you have this. Like Mipsy has said please do not Google or other search engines to look up the information.

[ashurrutia]

Thank you everyone for the support:

Update:

I talked to the neurosurgeon today, he said that the tumour was small, and was benign, and that apparently I had it for a long time now. So he ordered some tests, and if they come back clear, then he recommends I just get an MRI in a year to see if it has grown.

[anxious_thoughts]

Hello, I'm so sorry to hear about about this. I really hope it doesn't grow so you don't have to go through surgery, you're like me! Terrified of it.
I'm going through brain tumour anxiety right now, I was just wondering, what were your symptoms like before the diagnosis?

[djsandra]

I am so sorry to hear that you have been diagnosed with this. I will pray for you that everything will be okay at the end, and that your anxiety will be minimal. I am glad it is not so serious.

[ashurrutia]

I'm going through brain tumour anxiety right now, I was just wondering, what were your symptoms like before the diagnosis?

Why do you want to know???

[swgrl09]

I know somebody who had this type of tumor and had it removed, she is just fine now. Either way I am sure everything will turn out ok. :hugs:

[ashurrutia]

I know somebody who had this type of tumor and had it removed, she is just fine now. Either way I am sure everything will turn out ok. :hugs:

Yup even when they are pretty big, they usually don't cause much trouble and are removable.

[ashurrutia]

Update:

All but one of my hormone tests came back.

Cortisol(Adrenal), TSH-T4-FreeT4(Thyroid), Prolactin, Testosterone.

Everything is normal. :yesyes:

Still waiting on growth hormone, but Doc says that it looks like it is non-functioning.

[lollypopgirl1981]

aww thats great news im going through worry that i have it...as have noticed a tiny amount of milky from booby so mentioned to doc and she said she doesnt think anythink is wrong but still worried...i am so happy with your update for you....big hugs to you xxx

[ashurrutia]

aww thats great news im going through worry that i have it...as have noticed a tiny amount of milky from booby so mentioned to doc and she said she doesnt think anythink is wrong but still worried...i am so happy with your update for you....big hugs to you xxx


Well simply ask your Doctor to do a prolactin test on you, have you had a kid recently? If not, lactating does indicate high levels of prolactin, but in any case there is nothing to worry about, even if you were to have it, Prolactilomas are easily treatable with medications, and they do not require surgery, and often times shrink with meds. Now, that is, if you have it. I ended up changing neurologists, as my neurologist made such a big deal(She had her secretary call me up on Friday at 8:00 am to set up an appointment with her to go over the MRI, then again call me to order some test, and then referred me to a Neurosurgeon, and made it seem like it was life or death situation, when in fact it wasn't. The Neurosurgeon was a lot more understanding than her, and even told me that I had nothing to worry about) out of it that completely brought upon old anxiety stuff, and since this is the second time (Last time, I ended up at the ER because of her) she does that, I decided to change to another person.