Grade III: Anaplastic Oligodendroglioma

Myria11
Myria11 Member Posts: 2
in Brain Cancer #1
Hi everyone,

My brother had a seizure (Epileptic attack) while driving and got into a car accident.
Fortunately, the doctors did head scans and found to see what looked like calcium deposits on his brain.

My brother has been healthy and has shown no signs of illness what-so-ever.

They did further tests and found a large tumor about the size of a hand above his right ear.

He had an operation done and the doctor was able to take most of the tumor out. Unfortunately, we have received the testing results and he is diagnosed with cancer. Grade III: Anaplastic Oligodendroglioma.

He is only 34 years old and I have no idea how to cope with this bad news. We don't know for how long he will live with this problem.

He will be getting chemotherapy or radiotherapy very soon. He is also on medication to control the seizures.

What should we expect from all these treatments? Will he be able to live a healthy life afterwards!?

I am so scared and me and my family do not have much knowledge on brain tumors.

Can anyone give me information on this typical tumor? Any help will be greatly appreciated !

Thank you for your time,

Cheers!

Comments

  • AshleyWF
    AshleyWF Member Posts: 46
    #2
    Hi Myria11
    I am sorry to
    Hi Myria11
    I am sorry to hear about your bothers diagnosis. I still remember my struggle the day and the months forward after hearing the news that my boyfriend had grade II Oligodendgrolioma. So many questions, so many worries. I believe you made a great step in learning and healing by coming to this site. The people here were full of information and offered a ton of support.

    My situation is slightly different than yours. Jordan was diagnosed and went in for surgery shortly after that. His tumor was located on the left temporal lobe but also stemmed over into the right hand side of his brain. They were able to operate and remove a part of it, but not all of it. He did not have the gene deletions we had hoped for (I’m not sure if this is something you will be doing? Genetic testing to look for certain mutations that chemotherapy responds very well to) Jordan is on a “wait and see” type of treatment now. They removed the larger part of the tumor and we now go in every three months for an MRI to see if what is remaining has grown. They do not want to give him any treatment to the location of the brain if he can live just fine and healthy without it at this point, and there is no growth. This all in the end, has to do with the location of his tumor, or location I mean, with what is left.

    Jordan is doing just fine. Other than the scar on the back of his head, you would never know he has brain cancer. He is back at work, living life to the fullest, healthy as healthy can be. With that said, I remember all the different things I would hear, all the confusing words that you have not a clue what they mean in the beginning. The internet can be an amazing tool (it probably lead you here, as it did me) but it can be the worst thing for you in these situations as well. Easier said than done, I know, but try not to dwell on the “how long he will live” and defiantly do not search it! Each person is different, not one person with brain cancer is the same. It sounds like they have a plan set for him, he is young, his body is able to fight and bounce back easier. There are PLENTY of survivors on this site.

    We all start on little knowledge. I think that is the scariest part of it all. Not knowing. But as you learn, and as you read the MANY stories of survivors on this site, you find a comfort you didn’t think possible. There are plenty of pamphlets on this site that can help you. There is also information packages you can have sent to your home. Here is a link to the national brain tumor society as well. There is a TON of information there.

    http://www.braintumor.org/

    Another way I was able to understand and follow everything that was happening is the following:
    Keep a pen and pad of paper with you at all times. Anytime you have a question come to mind, write it down. Next time you are at the doctor, ask those questions. No question is a stupid question, it brings peace of mind having answers to even the smallest questions. (I have gone into one of Jordan’s appointments with 3 pages full of questions)

    Doctors can be great at blurting out 50 words in once sentence in these situations that you do not understand. Ask what it means and ask again if still don’t understand. Ask until you feel you really get what they are saying.

    All reports and forms, ask for a copy. This way, when you hear those large medical terms, you can find the meaning in a dictionary or online, or ON HERE. Plenty of people on here have the experience and understanding that we don’t!

    Your brother and your entire family are in my thoughts and prayers. I am so happy you made your way to this discussion board, I cannot express how much the people on this site have brought some contentment in my life and into a situation I was so unsure and scared of in the beginning.
    Ash
  • Myria11
    Myria11 Member Posts: 2
    #3
    AshleyWF said:

    Hi Myria11
    I am sorry to
    Hi Myria11
    I am sorry to hear about your bothers diagnosis. I still remember my struggle the day and the months forward after hearing the news that my boyfriend had grade II Oligodendgrolioma. So many questions, so many worries. I believe you made a great step in learning and healing by coming to this site. The people here were full of information and offered a ton of support.

    My situation is slightly different than yours. Jordan was diagnosed and went in for surgery shortly after that. His tumor was located on the left temporal lobe but also stemmed over into the right hand side of his brain. They were able to operate and remove a part of it, but not all of it. He did not have the gene deletions we had hoped for (I’m not sure if this is something you will be doing? Genetic testing to look for certain mutations that chemotherapy responds very well to) Jordan is on a “wait and see” type of treatment now. They removed the larger part of the tumor and we now go in every three months for an MRI to see if what is remaining has grown. They do not want to give him any treatment to the location of the brain if he can live just fine and healthy without it at this point, and there is no growth. This all in the end, has to do with the location of his tumor, or location I mean, with what is left.

    Jordan is doing just fine. Other than the scar on the back of his head, you would never know he has brain cancer. He is back at work, living life to the fullest, healthy as healthy can be. With that said, I remember all the different things I would hear, all the confusing words that you have not a clue what they mean in the beginning. The internet can be an amazing tool (it probably lead you here, as it did me) but it can be the worst thing for you in these situations as well. Easier said than done, I know, but try not to dwell on the “how long he will live” and defiantly do not search it! Each person is different, not one person with brain cancer is the same. It sounds like they have a plan set for him, he is young, his body is able to fight and bounce back easier. There are PLENTY of survivors on this site.

    We all start on little knowledge. I think that is the scariest part of it all. Not knowing. But as you learn, and as you read the MANY stories of survivors on this site, you find a comfort you didn’t think possible. There are plenty of pamphlets on this site that can help you. There is also information packages you can have sent to your home. Here is a link to the national brain tumor society as well. There is a TON of information there.

    http://www.braintumor.org/

    Another way I was able to understand and follow everything that was happening is the following:
    Keep a pen and pad of paper with you at all times. Anytime you have a question come to mind, write it down. Next time you are at the doctor, ask those questions. No question is a stupid question, it brings peace of mind having answers to even the smallest questions. (I have gone into one of Jordan’s appointments with 3 pages full of questions)

    Doctors can be great at blurting out 50 words in once sentence in these situations that you do not understand. Ask what it means and ask again if still don’t understand. Ask until you feel you really get what they are saying.

    All reports and forms, ask for a copy. This way, when you hear those large medical terms, you can find the meaning in a dictionary or online, or ON HERE. Plenty of people on here have the experience and understanding that we don’t!

    Your brother and your entire family are in my thoughts and prayers. I am so happy you made your way to this discussion board, I cannot express how much the people on this site have brought some contentment in my life and into a situation I was so unsure and scared of in the beginning.
    Ash

    Thank you!
    Hi Ash,

    No words can describe what I am feeling right now and it's new to all my family. He has been diagnosed yesterday! Grade III is agressif and the issue is that it can come back very fast!

    Thank you for all the information that you have provided for me.

    The doctors will be doing further tests on Trevor and they will eventually give him an appointment to start his treatments. His doctor is great and she is very positive that he will get back on his feet and back to work like any other healthy person.

    My brother will be having scans every three months as well to make sure that the tumor isn't growing.

    I am so nervous. My brother isn't taking the news well and he is smoking too much cigarettes and drinking too much alcohol.

    I just want him to take care of himself, and do it not only for his health but also for his loved ones surrounding him.

    All I can do is stay positive and support him during these rough times :( What surprises me the most is that my brother was completely healthy, NO SYMPTOMS whatsoever. He even went parachuting, then two days later he had a seizure (epileptic attack) while driving and got into an accident. They did scans and found out that he had a brain tumor.

    How scary can that be? The doctor said if it wasn't for his accident we would have never found it and he would have died within a matter of weeks or months!!!!!

    I am heartbroken to know that you can have such a serious health condition without any signs of it :(

    I came to this site with hope that I will hear positive stories and look up to people that passed through it with success :)

    I will be praying for your boyfriend as well and I hope that he continues staying healthy and living life to the fullest !

    Good luck ASH ! :)
  • leoecam
    leoecam Member Posts: 1
    #4
    My husband was diagnosed
    My husband was diagnosed with an anaplastic oligodendroglioma III in June of 2008. I will be happy to answer any questions you have about this type of tumor or treatment. Why don't you message me privately with what you want answered, although EVERY case is different even with the same type of tumor. Prayerfully hoping the best for you all.

    Betsy Peters
  • coyoteblue
    coyoteblue Member Posts: 3
    #5
    leoecam said:

    My husband was diagnosed
    My husband was diagnosed with an anaplastic oligodendroglioma III in June of 2008. I will be happy to answer any questions you have about this type of tumor or treatment. Why don't you message me privately with what you want answered, although EVERY case is different even with the same type of tumor. Prayerfully hoping the best for you all.

    Betsy Peters

    Oligodendroglioma
    Hi Betsy,
  • coyoteblue
    coyoteblue Member Posts: 3
    #6
    leoecam said:

    My husband was diagnosed
    My husband was diagnosed with an anaplastic oligodendroglioma III in June of 2008. I will be happy to answer any questions you have about this type of tumor or treatment. Why don't you message me privately with what you want answered, although EVERY case is different even with the same type of tumor. Prayerfully hoping the best for you all.

    Betsy Peters
  • greenmawmaw
    greenmawmaw Member Posts: 6
    #7
    leoecam said:

    My husband was diagnosed
    My husband was diagnosed with an anaplastic oligodendroglioma III in June of 2008. I will be happy to answer any questions you have about this type of tumor or treatment. Why don't you message me privately with what you want answered, although EVERY case is different even with the same type of tumor. Prayerfully hoping the best for you all.

    Betsy Peters

    my son brain tumor
    so how is your husband doing?
    when was his last treatment?

    my son was diagnosed with anaplastic oligodendroglioma III in feb 2008.
    in april 2011 they found it again and he had full head radiation in aug 2011, and again in oct. 2011 he had stereotactic radio surgery.
    he seem to handle it well, but,, now i am starting to see a change in him and it scares me....wondering how your doing, and coping.......
  • sadinholland
    sadinholland Member Posts: 248
    #8
    greenmawmaw said:

    my son brain tumor
    so how is your husband doing?
    when was his last treatment?

    my son was diagnosed with anaplastic oligodendroglioma III in feb 2008.
    in april 2011 they found it again and he had full head radiation in aug 2011, and again in oct. 2011 he had stereotactic radio surgery.
    he seem to handle it well, but,, now i am starting to see a change in him and it scares me....wondering how your doing, and coping.......

    Greenmawmaw
    Do you mean gamma knife? May I ask what changes you are noticing? They are talking about that IF they still see something on my husband's next appt. next week.
  • greenmawmaw
    greenmawmaw Member Posts: 6
    #9
    sadinholland said:

    Greenmawmaw
    Do you mean gamma knife? May I ask what changes you are noticing? They are talking about that IF they still see something on my husband's next appt. next week.

    sons changes,
    well they are just some of the usual, of weakness, tiredness seem to be getting more often. but i also notice his memory is getting short span, more and more. and then sometimes he seems just lost, as if day dreaming, stareing off.
    he sweats all the time, he gets shakey, what i mean by shakey is i guess like a elderly persons shakes. his left leg seems to have more of limp, basically his left side.
    i guess its more the memory and weakness..

    sorry i am not good at this, hope it helps.. but he had some of these things after the sezior, but now it just seems to be more worse..

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