suspected mesial temporal ganglioglioma

FormerMember
FormerMember
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hello everybody,
im new to the group and english is not my first language, so sorry for the mistakes.
i've been diagnosed of a ganglioglioma (low grade glioma) in my right mesial temporal lobe.
it was discovered by errors, because i bugged my doctor for a rmi.
i had a really strange flu, tinnitus and a kind og ghost image problem in my right eye.
so i had the scan february and then one with contrast liquid in march.
I went to the hospital of my town where neurology is a must and they told me take it easy is a loww grade tumor, see you in six month
so i went in another town to a super brain surgeon , and he told me is 99% a ganglioglioma or dnet.
so wait 6/8 months and repeat the mri with contrast and enjoy the summer.
last month i went to milan , at neurological hospital, that is a real super place for all this.
i takled with a neurooncologist, neuroradiologist and radiotherapyst.
he confirmed me the same thing and asked me if i wanted to be followed by thei team of specialists.
i said yea.
they called me after a month yesterday.
they discussed my case and they wnat me to spend some day by the center to check some tests, because i should have symptoms(seizures) that i really don't have.
repeat the mri and decide what is going to happen. if i have to take surgery or other therapy.
they told me nothing is changed from the last month. but the place where i have this lgg is really serious.
im totally scared.
im really scared.
bests

  • Hello Isaw,

    Sorry your post hasn't had a reply yet. How are you feeling now? Have you had any more results back?


    Hopefully this will bump your post up and someone with more knowledge will be able to help you.


    Take care,


    Lass

    xx



    I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.

  • FormerMember
    FormerMember

    Hi there

    i face pretty much the exact same situation: suspected right temporomesial lobe ganglioglioma or DNET (head of hippocampus, amygdala, some parts of uncus). 

    it was found by accident roughly 1 year ago. i also have no symptoms (no seizures etc). I am 50 years old. 

    after having seen multiple experts (neurosurgeons, neurologists, epileptologists) I have decided to NOT have surgery. As i have no symptoms i also have no other therapy but rather live my normal life as before this was found (except yearly MRIs to check up).  

    Gangliogliomas and esp. DNETs are benign. Prognosis is excellent. Being a trained neuropsychologist myself, I have read most available research papers on these tumors. I feel very confident about my decision not to have surgery. I am also in touch with others here in my country that face the same or a similar situation (suspected ganglioglioma/DNET), they are on wait and watch as well. 

    glad to talk more if you want to get in touch

    best of luck

  • FormerMember
    FormerMember in reply to FormerMember

    thanx a lot for your reply.
    i went to the best neurological center in italy last month.
    in a week and all the medical exams possible.
    i'm waiting my records and files.
    they said nothing had changed from 8 months ago.
    but they push to resect the lgg.
    is 2 to 2,5 cm big.
    i really don't know what to do.
    big questions
    thanx a lot
    ps: is there a forum or a fb group about this specific glioma?

  • FormerMember
    FormerMember in reply to FormerMember

    my GG/DNET is 2.1 x 2.2cm, so similar to yours. 

    why do they want/push to remove it? 

    GG/DNET grow extremely slowly, if at all (Grade 1). While "true" lgg (astrocytoma, oligodendroglioma) grow much faster, even at lower grade (roughly 4mm per year). 

    since yours has not grown, it reinforces the suspicion of being a benign tumor (i.e. GG or Dnet). which is of course good news. 

    the challenges I see with resecting the GG/Dnet: 

    - surgery may result in seizures (while I currently have none), due to scars in neural tissue / "left over" tumor etc
    - temoporomesial temporal lobe is a delicate region, close to vital stuff (arteria etc), so it takes a lot of experience from surgeon
    - removing hippocampus may result in memory problems
    - removing amygdala may result in emotional problems (amygdala being one center of emotions in the brain)

    I dont see myself taking this risk if at the moment i have zero problems, and if indeed it is a GG/Dnet. all experts I have talked to said that GG/Dnet only have to be operated if they cause seizures that cannot be treated with medication (which they typically do), NOT because of the tumor itself. Of course, without operation one cannot be 100% sure if it is a GG/Dnet. However, MRI can give good indications, and no growth can confirm the suspicion. if indeed it is a GG/DNet, likelihood is high that we have it since birth. 

    anyways, I fully understand that this is a difficult decision... 

    [edited by admin]

    all the best

  • FormerMember
    FormerMember in reply to FormerMember

    they told is because im young and the outcome should be better.
    they told me they take 5/6 of this surgery per month, so they are an excellence on that.
    they told me they sugget but i am the one who'll take the decision. 
    im going to meet another neurosurgeon i went monts ago to have other suggetsion. 
    my family doctor told me to wait.
    mine lgg doesn't take contrast, is not well defined and kind of bubble and cystic.
    thanx for the reply
    keep in touch
    it was so hard found someone with the same issue and have suggetsions
    thanx really a lot


  • FormerMember
    FormerMember in reply to FormerMember

    hey
    hello 
    i hope you are fine
    i went to a neurosurgeon today (the one first suspected a ganglioglioma, and the one i asked for the second opinion)
    i brought the last mr , tc etc.
    he told me that:
    if is a dnet i can keep on watch and wait
    but if is a ganglioglioma the resection is the best option and the one in the future.
    he said he can't say 100% is a ganglioglioma or dnet, based only on mri.
    so im kind of confused.
    im still waiting the call form the hospital i went for one week ehre i took all the exams (as they have my oldest mr etc)
    it seems they are so interested in the surgery and i really dont know why.
    for the first time i saw the "thing" in my brain.
    and is bubbly, ike a lot of small cysts, but hey, i really can't explain it.
    so now this second opinion tolm me to wait 8 months and then take the third rmi.
    he told me that 8 months are not enough to understand if it grows or not . but it takes up to one year and a half.
    im confused again.
    thanx for the suport
    bests


  • hi there

    thanks for the update. "bubbly" and cystic are hallmarks of DNET but cysts are also typical for Ganglioglioma (GG).

    either way, most gangliogliomas are grade 1 (as are DNET), thus benign and very slow growing, if at all. 

    in my case, as in the other similar cases I am aware of here in my country, neurosurgeons do not really make a difference between DNET and GG when it comes to decide between surgery vs wait & watch. 

    honestly, if I were you, I would wait and get another scan as soon as useful (typically 1 year after last). if there is no growth, and you do not have any problems, it strongly suggests Grade 1 - and thus wait & watch can make sense. it is the approach I take. 

    what is clear is that we have a higher risk for seizures, and of course we have to live with knowing that there is a tumor in our brain. on the other hand, surgery can result in seizures as well. 

    it is confusing, i fully understand - have been there as well... 

    again, IF you can live with this for another year, to then get another scan, that would be my approach. 

    hope it helps

    all the best to you

  • FormerMember
    FormerMember in reply to Hemsby2008

    hello Hemsby some news.
    the neuroradiologist doc from the neurological instuitute wrote me today
    she told me she talked with the neurosurgeon and he told her that is for the surgery.
    im really in shock  because i dont know why.

    i will ocntact the neurosurgeon in the next days.
    i thought that as im asymptomathic they'd wait.

    bests

  • Hi there

    ummm...

    honestly, if you can I would try to relax - the most important information, I think, is that your tumor is most likely benign (DNET or Ganglioglioma). benign essentially means that it wont grow (or not much) and you will not die from this.

    what this means, in my mind: 

    - you have time to make your pro/contra surgery decision, esp. since it was discovered by accident and you are asymptomatic

    - being "in shock" (which I 100% understand) is not a good place to make a decision - vs. wait for another year and do another MRI, and have much more time to absorb all of this

    - you may have this tumor since childhood/birth - if so, why take it out now if you have no symptoms? 

    it is important to remember, I think, that neurosurgeons tend to go for surgery ("in doubt, cut it out"), so take that into consideration. Neurologists are more conservative. Will be interesting to understand the WHY they suggest surgery. 

    at the end of the day, it will be your decision, its your brain after all :)

    keep me posted and good luck to you

  • FormerMember
    FormerMember in reply to Hemsby2008

    thanx a lot for the reply
    they waited two months for the answer.
    i think they really want to cut it off to understand 100% what it is
    M