Pituitarty macro-adenoma 1.4x1.8x1.4 cm

[vegachka]

Hi, I'm a 28 year old female who has had irregular periods every since my son was born three years ago. They've been getting worse and worse. I've recently started lactating, developed headaches, and my periods have stopped (I'm not pregnant but very much want to be!). My PCP ordered an MRI with contrast which showed a rather large pituitary macroadenoma - 1.4x1.8x1.4 cm. I saw an endo who said my prolactin (73) is not high enough for it to be a prolactinoma and I would require surgery. I'm terrified!!! Waiting to finish bloodwork and meet with neurosurgeon. So scared the surgery won't go well, or I'll be in the hospital for a while, away from my little boy, or will have complications, or the tumor will grow back, or I won't be able to get pregnant, and will have to be on a dozen hormones afterwards. Can anyone offer support? Thank you!

[rumpled]

No, meds do not work on non-secreting tumors. There is no hormone for the meds to interact with - and those tend to get large, fast. Yours is already large - so they need to take action fast due to its proximity to the optic nerve. Make sure you stress that when you make the appt or they will make you wait a long time.

I had a couple of tumors at the same time - a prolactinoma (my levels were low or normal) and Cushing's. The Cushing's pretty much was my nasty and ruined my body. My sizes were 3mm and 5-6mm, left and right side but the Cushing's one ended up by the time I had surgery had flattened out to spread out all over my pituitary pretty much. There is a picture in my pics. It was also a lot larger but did not even show up on the last MRI but just as a shadow. It came back. I had pituitary and adrenal surgeries for that.

[vegachka]

Thank you for your comments. I went to see a neuro-opthomologist who did the visual field tests and my vision was fine.

I'd love to try meds first but would they work on a non-functioning, non-secretory tumor? I'm looking at neuro-endos in my area and will start calling tomorrow to schedule appts with them. In the meanwhile, is there a way to know for sure if something's a prolactinoma or not? It sounds like the size of the tumor is not an indicator and but the amount of prolactin serum might be.

What was your situation? What kind of tumor did you have? What size? How were you treated?

Thank you!

[rumpled]

The part that is abutting the optic nerve is not operable. The doc would risk blinding you. There are a few super skilled docs that can take it on - but you need to seek them out as they do more than 100 in a year and have more than 1000 under their belt already. Skills really tell here. They would look at the MRI and decide if they would or would not and decide how much to take.

You also need to see a neuro-opthomologist as your tumor may effect your vision. Since it effects the vision to the side, it is not really noticed at first. You need visual field tests.

On the inoperable parts, they may or may not do radiation - it depends as radiation has radiation leakage, and you do not want to radiate the optic nerve. I do hope they do meds first as that is your best bet. Do try a pituitary center and test several times.

[vegachka]

Hi, thank you for your post!! The tumor is "abutting without invading the right cavernous sinus; there is suprasellar extension along with mild compression of the optic chiasm slightly asymmetric towards the right." I'm hoping this means the tumor is fully removable, should we choose to operate.

I don't think my endo was a neuro-endo. I'll look for one right now. My GYN just called and said the same thing you did - maybe we should try meds first before rushing to the OR. Would love that!!!

Thank you!
Lana

[rumpled]

First of all, please go find another opinion. Prolactin levels do no, I repeat DO NOT correlate to the size of the tumor. So as long as you had an abnormal level, they should try you on the medication first and see if that reduces the size of the tumor.

You did not say if the tumor grew up to the optic nerve or down to the canvernous sinus - but parts of your tumor are inoperable, so you need to have a very experienced surgeon if and I do mean IF you choose to go that method - so please choose carefully as your health can be severely impacted by this decision. You do not have to see the first surgeon nor anyone locally so pick carefully. You may also need radiation.

Your endo should be a neuro-endocrinologist, not just any endo - so if your endo is not a good endo, get copies of your tests and move on. I saw 10 at least. Get copies of everything, read up and don't let the doctors tell you to do something that is not correct.