Oligodendroglioma

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  • Vlynn84
    Vlynn84 Member Posts: 1
    #102
    Feeling Lost

    I'm feeling so lost. I was told by my family physician on a Monday that I had a brain tumor and needed surgery to remove it. On Thursday, the neurosurgeon told me that it was most likely a grade 2 oligodendroglioma and that for now I will have another MRI in three months. He said it can't be technically diagnosed until they have tested a sample, which can't really happen without the surgery. As of now, I'm supposed to live life as normal. I'm left wondering, do I have a tumor? What now? Do people really live with these inside their brains and nothing ever happens and they live a long life into their 80s with nothing ever happening?

  • Deana Rae
    Deana Rae Member Posts: 3 Member
    #103
    Vlynn84 said:

    Feeling Lost

    I'm feeling so lost. I was told by my family physician on a Monday that I had a brain tumor and needed surgery to remove it. On Thursday, the neurosurgeon told me that it was most likely a grade 2 oligodendroglioma and that for now I will have another MRI in three months. He said it can't be technically diagnosed until they have tested a sample, which can't really happen without the surgery. As of now, I'm supposed to live life as normal. I'm left wondering, do I have a tumor? What now? Do people really live with these inside their brains and nothing ever happens and they live a long life into their 80s with nothing ever happening?

    I understand where you’re

    I understand where you’re coming from. in November i was told i have tumor on brain December was biopsy January was surgery radiation and chemo. Every thing moved so quick and that was probably the best for me. Honestly i finished treatments February 26th and returned to work march 5th.  I take my chemo pills 5 days a month and things seem to be going very well.    I think things depend on size location ...     stay strong and positive   

     

     

  • aechristian
    aechristian Member Posts: 2
    #104
    Oligodendroglioma Grade II

    I'm 45.  I received a glioma diagnosis 8 years ago.  It was asymptomatic so it was watched yearly until last year when I began to have seizures. 

    I just had a biopsy last month and received the official diagnosis.  Unfortunately I cannot be operated on due to the location of the tumor, unless as a later resort.  (I'm likely to have stroke symptoms and other motor issues)

    I'm about to start radiation and temodar next week for six weeks, probably with monthly maintenance temodar.  I've been on seizure meds with varying success.

    I'm happy to hear so many long term survivors. I know it won't be easy but it gives me hope I may live to see other things in my life.  I know the thoughts of shortened life can be depressing, but years of survival still sounds good when currently fighting for days.  Remember... everyone goes there eventually... this is *not* a failure, but our nature.


    Best wishes and lots of love,

    Amy

     

  • aechristian
    aechristian Member Posts: 2
    #105
    Vlynn84 said:

    Feeling Lost

    I'm feeling so lost. I was told by my family physician on a Monday that I had a brain tumor and needed surgery to remove it. On Thursday, the neurosurgeon told me that it was most likely a grade 2 oligodendroglioma and that for now I will have another MRI in three months. He said it can't be technically diagnosed until they have tested a sample, which can't really happen without the surgery. As of now, I'm supposed to live life as normal. I'm left wondering, do I have a tumor? What now? Do people really live with these inside their brains and nothing ever happens and they live a long life into their 80s with nothing ever happening?

    Oligodendroglioma Grade II

    I'm 45.  I received a glioma diagnosis 8 years ago.  It was asymptomatic so it was watched yearly until last year when I began to have seizures. 

    I just had a biopsy last month and received the official diagnosis.  Unfortunately I cannot be operated on due to the location of the tumor, unless as a later resort.  (I'm likely to have stroke symptoms and other motor issues)

    I'm about to start radiation and temodar next week for six weeks, probably with monthly maintenance temodar.  I've been on seizure meds with varying success.

    I'm happy to hear so many long term survivors. I know it won't be easy but it gives me hope I may live to see other things in my life.  I know the thoughts of shortened life can be depressing, but years of survival still sounds good when currently fighting for days.  Remember... everyone goes there eventually... this is *not* a failure, but our nature.  I'm happy to discuss.

    Best wishes and lots of love,

    Amy

  • brainep
    brainep Member Posts: 3
    edited May 2019 #106
    Misty01 said:

    Stay Positive
    This is my first post, and to be honest I'm not sure what to say. You got through it once before and after you sit down and take a few deep breaths, you will find the inner strength to face this challenge head on again.
    I was diagnosed in April '10 with a grade II oligo after suffering an unexpected seizure. My MRI showed a 5x5 cm tumour in my Parietal lobe. I had a partial resection in early May. Unfortunately 4 weeks ago I suffered 28 grand mal seizures in 24 hrs. After a further MRI, it shows there is still 50% of the original tumour in my brain. I am scheduled to see my surgical team next week to discuss further surgical options such as a repeat proceedure, or whether to be awake this time as the remaining tumour is so close to my sensory and motor control centre. I was hoping someone may have had their surgery while awake and could let me know what I would be in for...good or bad. Only way to know is to ask someone who has experienced it.
    I do have the 1p-19q deletion, and the idea of chemo/radium has been discussed, but I am getting conflicting advice from the oncolgist/radium therapist about whether or not to have the treatment. I am so confused and feel overwhelmed, I felt I needed to seek help and advice from those who understand exactly where I am coming from. Any replies would be most welcome.
    My thoughts and prayers are with all who are battling their own "Terry the tumour"

    Yes - STAY POSITIVE!!!

    Good to hear so many up-lifiting stories from people like me who survived an Oligodendroglioma.  My first was in Sept 2003 (Stage II), then a Stage III in Jan 2011 followed by a nasty surgical infection.  


    Now simply live for the day and enjoy THE NOW with my dear wife.  

     

    Peace & Love!  Brian

    Brian K. Kissinger

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