Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

suspected mesial temporal ganglioglioma

akist
Posted by

Don't want to scare anyone but there are plenty of astrocytomas and other gliomas that do not show any changes on yearly scans, yet, due to their nature they are guaranteed to grow and to mutate to become worse and worse. This must be the reason why half of the surgeons have recommended surgery. If you can catch the glioma very early you have very good chances. I suppose that is why, maybe, some of the surgeons want to err on the side of caution.

Georg87
Posted by

Astro or gliom grad 1 yes can be without change. Grade 2 glioma (without treatment) always grows, but since he has cystic character of the lesion and he has umd had no symptoms coming from tumor (chance finding) and the whole seat in temporal lobe region, dnet is most likely and OP can only do more harm.

IsawRambowhenIWas6
Posted by

the last neurosurgeons told me that there are also astrocyromas that doesn't grow but change or evolve in grade.
plus they toldme that over the 40 s if is going to get bad is going to get real bad and waith for changes is really ricky.

now i feel like if i had lost precious time

:(

IsawRambowhenIWas6
Posted by

hello everybody how are you all?
the time for the 10 months scan is coming and i start panicking.
plus the 31st of january i had a real bad heart attack......can you believe it????!!!!!
so i talked to the neurosurgeon, and they told me that im going to check and we'll see how to move on.
im taking meda to keep my blood fluid.
let me know about you all
best

Georg87
Posted by

Hello, I'm fine, last scan was as you know in August 2018 next will be in August 2020. So now every 2 years and there is no reason to push it because I'm fine so it can stay that way.

Tip for you: do not worry and think better of your heart! It will be unchanged and then you can do it only once a year or even 2 yr old. Reports soblad you have the scan and the results are evaluated

Best regards and a lot of health from Germany, Georg

IsawRambowhenIWas6
Posted by

thanx a lot Georg for your reply
i called the neurosurgeon, she told me i can take the scan in september, and no hurry.
so i can enjoy summer

Hemsby2008
Posted by

hi there,

i am sorry to hear about your heart problems! I fully agree with Georg that this should be your focus... enjoying summer sounds like a good plan!

personally, I am doing very well, living my normal life (i.e. hectic :) )

all the best to you

emm14
Posted by

Hello All, I just wanted to mention that my tumor was found 20 years ago and diagnosed as a probable DNET about 12 years ago. It has remained stable throughout the years thankfully and since I don't it have seizures, my past and present neurosurgeons have been happy to leave it alone. I now have scans every three years. I have found over all these years that you do have to find a doctor that is experienced with DNET as it is rare. (I have also been misdiagnosed by inexperienced doctors, including a neurosurgeon, at least five times by doctors who have insisted that it is an AVM and not a tumor and will then call a neuroradiologist and get a lesson in radiology). All of this to say...some doctors have just not seen enough of these in person so if a second opinion is an option for you, it's a good idea to seek it out. Best of luck and good health to all!

Madesp
Posted by

Hi emm14 

Can I ask you what the initial diagnosis was. What did the pathology report say.Did they do extra tests and how did they come to the conclusion it was DNET? 

Mad 
IsawRambowhenIWas6
Posted by

thanx a lot for your reply.
since the beginning this thing was making crazy the neurologists and neuroradiologist.

because is not taking any contrast and because is cystic and bubbling.

the place is the right hyppocampus, (temporo mesial) 

from marc 2017 to september 2018 it never changed.
and i took 3 scans.

i staied for one week in an important neurological hospital, and been studied by a super team in the hepilectic departement.

but i have no seizures, no problem of any kind or sympthoms.

so they think this thing is there from acient time.

the only thing is that 5 neurosurgeons told me is to remove.

thi because they supposed is a dnet.

but till they dont have the chance to analyze it they cant say.

so for them the surgery is a must to do.

and it was found by accident, not for any specific reasons.

Georg87
Posted by
Hello Emm
Thanks for your contribution!
This will give everyone here the courage to live with "Wait and see".
This tumor is really rare and even rarer there are people who have this biopsy or OP as a random find.
Was that a coincidence find with you? (no symptoms regarding the diagnosis)
Does the tumor have a cystic structure or is it circled by multiple cysts? (typical imaging for Dnet)
No contrast media recordings?
May I ask how old are you?
Biopsy was not done?
Sorry for many questions, but there are not many people who have a similar diagnosis!
Am 31 years old
For me it was found 3 years ago by pure chance find. Since the wait and see. As the tumor has not changed after 2 years since finding me MRI control was recommended only every 2 years. Due to the course and stru
Structure of my tumor is thought to be dnet or ganglioglioma (3 opinions) and 2 surgeons think it is innate. I am fine. First year stress was pure because of findings, last for it completely relaxed and it gets better and better :)