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Daughter has a brain tumor. (Not cancer)

Yota Up

Dull man
Joined
May 20, 2020
Member Number
648
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1,616
Just got word after an MRI that they found a tumor in her brain. Junior high school age girl.
It's small and not cancer so that's good. We haven't told her yet. Want her to finish a fun summer and start school without a frown.


The tumor is against the pituitary gland. She stopped having periods and I'm worried about her ability to have kids in the future.
The online stuff I found where people had success talked about using certain drugs to reduce high prolactin levels. Problem is, her prolactin levels are normal and well below "high".

Anyone ever dealt with or know anyone with this condition?
We're scheduled to meet the specialist doc next where he'll go over everything but I'm curious about what we're in for.
 
I had a roommate in college who has a brain tumor removed. Health wise he was fine after getting it removed but his grades dropped because it affected his memory a bit. I think they got it controlled with some meds.
 
Yota Up said:
Just got word after an MRI that they found a tumor in her brain. Junior high school age girl.
It's small and not cancer so that's good. We haven't told her yet. Want her to finish a fun summer and start school without a frown.


The tumor is against the pituitary gland. She stopped having periods and I'm worried about her ability to have kids in the future.
The online stuff I found where people had success talked about using certain drugs to reduce high prolactin levels. Problem is, her prolactin levels are normal and well below "high".

Anyone ever dealt with or know anyone with this condition?
We're scheduled to meet the specialist doc next where he'll go over everything but I'm curious about what we're in for.
Click to expand...

My first wife had the same thing, they were able to give her meds that shrank it. She's been fine ever since.

Stay off webmd
 
I cannot imagine having to deal with that. We do not have children, so I'll give no advice on that.

As for medical... Couple things. These are just broad and applicable to anyone really.

1) Ask LOTS of questions. Start writing them down now so you don't forget.
2) If it doesn't make sense to you, ask ask ask until it does.
3) If at the end of the consultation you're not satisfied, don't be afraid to get another opinion.

Hoping for the best. Good luck.
 
Best advice I can give is to stay off Google. It's a useful tool but it's also guaranteed to give you worst case scenarios.

I'm sorry y'all are going through this. From some recent issues I've had personally I've run across various potentials for brain tumors. Not that any of them are desirable but a pituitary tumor is one of the most treatable from my understanding.

Stay strong, post all you need and ask all you want. This place is here for ya.
 
Have had one for a long time. Drs thought it was maybe from when I had a TBI in 2011

Wasn't suspected to be a problem so I just have MRIs to check every couple years.

Was found when I started getting random phantom smells like burning bread, hot wiring, old grease, tire smoke, food cooking
And dizziness. Like whole house swaying dizziness to the point I'd barf
 
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I have no specific medical advice beyond hang in there. Don’t get in your own head about it and make it worse than it is before you find anything out. If you can keep your head up it’ll make it easier for her to stay positive. Mindset is as important as anything.

Good luck man.
 
My little sister had a non malignant brain tumor the size of a lemon discovered when she was about 12. It was growing against her optic nerves causing vision issues and headaches. It was removed successfully with 1990s technology. Years later my dad discovered he has a similar tumor growing very slowly. They aren’t even treating it, just monitoring its growth every so often. I should probably get checked I suppose.

Technology has come light years since my sister went through it. Your daughter will be fine. :beer:

*edit, my sister did lose her pituitary gland in the process. She had to take growth hormones afterwards. She has no children, but that’s by choice.
 
Tough to hear, I can't imagine going through this I have one that age, adding that in to all the other changes would be a lot.

Props to you for putting her first, letting her finish Summer, give you parents time to process as well.

Remember we are living in the most blessed time in human history regarding medical care, you are in good hands.
 
Sorry to hear this most unfortunate news, but it sounds like it’s been caught very early which leaves you with many options

As others have said, stay off the googles and let the doctors do their jobs. If there’s questions that aren’t being answered, take the imaging to another provider and/or ask for an additional radiologist to look at the imaging and write a full review

I’ve been working thru some kinda crazy health issues and have had a lot of “ incidental findings “ during imaging. Only piece of advice I can give is be mindful of the imaging agents ... they have a time and a place, but too many providers use gadolinium when it’s not strictly necessary. Once an anomaly has been identified, it can be tracked pretty effectively without using that imaging agent. Gadolinium is just a necessary evil sometimes, but it’s a forever thing and limiting it’s use is just sound medical practice

Isovue390 ( radioactive iodine ) is a lot less impactful, ( though still not great for kidneys/liver). With proper hydration is excreted fairly quickly and with minimal long term impact


Best of luck on finding the best treatment plan
 
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