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Thread: oligodendroglioma II in 3 year old

  1. #1

    oligodendroglioma II in 3 year old

    Please does anyone have any experience with an oligodendroglioma II in children? My three year old son was diagnosed in April 2008. It's such a rare tumor especially in children, and I can't really find a lot of information. My son's oncologist said this particular tumor acts differently in children than in adults, so even what I can find might not be valid information. Any help is very much appreciated. I am especially interested in chance of recurrence since they believe they have a good resection.


    Mother of 3yo diagnosed with Oligodendroglioma II
    -No 1p/19q deletion
    Removed April 2008
    -Watch and wait (and worry)

  2. #2
    Senior User
    Join Date
    Nov 2007
    Hello Andria,

    I am so sorry to hear of your son's tumour. My husband has a grade 2 glioma and it's tough for me to deal with that, but I think if it was one of my two girls - I really don't know what I would do.

    I would love to be able to offer you some sort of information on how this tumour affects children, but I don't really know much about that. I can say that when my husband had his last neuro-onc visit, before our n-onc came in we were visited by an oncologist who normally works at the nearby children's hospital. We were asking her about the difference in treatment between adults and children, and she said there isn't any difference. We didn't ask about how it acts, however.

    As far as treatment goes, if it is anything like in adults as she said, because his doesn't have the 1p/19q deletion, they may do what they did with my husband - which was wait for any recurrance, then treat with radiation (he also had a second surgery before the radiation). Since there has been another recurrance, they have decided to use chemotherapy called temodal, which has been pretty good as far as a low level of side effects.

    I hope you can find some more valuable information from others on this site - this is a great source of support as well if needed. I wish you, your son, and your family all the best in managing this.

    My heart goes out to you,

  3. #3
    Andria, I am so terrible sorry about your son's glioma. I had a grade II glioma in 1992 but I was 38 at the time.

    The good thing, if there can be a good thing, is that the brain of a 3 year older has not fully matured yet. Whatever damage the cancer has caused can be overcome by other parts of the brain taking over the functions of the damaged area. Do you know how big the tumor was? How did you find out about it? My oncologist said that I could have been born with my glioma so I am interested in what cased your son's glioma to show itself earlier than mine.

    It is so unfair for someone so young to be going through all of this

    You and your son and in my thoughts and prayers.
    Long-term cancer survivor
    1992 Astrocytoma grade 2, left motor strip
    2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
    My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
    My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
    My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029

  4. #4

    oligodendroglioma II in three year old

    Before the surgery, the neurosurgeon said it was the size of a silver dollar, but I haven't confirmed that post-surgery. Josh was having tons of seizures everyday; as many as 40-50. I don't know if we were just lucky to have all of those seizures or if it had something to do with placement of the tumor, but the oncologist said it's very good that we caught it so early and it was able to be resected so well.

    Jim, you're right, we are lucky about his age. They are telling me it's a better prognosis for children, not to mention how quickly he's healed from his surgery. I'm so amazed at how good his incision looks.

    On the other hand, it's very scary to see the mortality of your child at such a young age. Especially because it's not something they've found in many other children. I just want to understand everything.

    Mother of 3yo diagnosed with Oligodendroglioma II
    -No 1p/19q deletion
    Removed April 2008
    -Watch and wait (and worry)

  5. #5
    Newbie New User
    Join Date
    Jun 2011
    Hi there, I know it's been a few years since you posted this question asking for help but I have only just joined this group and saw your question. I understood your plea for a "sister sou"l who had gone through the same thing as yourself with a young child. My son was diagnosed in 2007 at aged 8yrs old with an Oligodendroglioma and was operated on the same year so I know what your going through and how frustrating it is to find another parent who's child has been diagnosed with the same illness as it is rare. Your welcome to email me if you want to ask questions or just have a chat with someone who understands completely. I look forward to hopefully hearing from you. Kind Regards Fiona

  6. #6
    Newbie New User
    Join Date
    Dec 2014
    Hi Andria,

    I saw your post. We recently found out my son who is 30 months also has the same tumor. He had complete resection of the tumor done in Dec 2014. We met with onconlogist he said chances of reoccurance looks slim. They wanted to have follow up MRI every 3 months, I wanted to check with you how is your son doing now? Just like you I'm worried about my child. Any help on this I really appaericiate.


  7. #7
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    Please be aware that this thread is years old and you will probably not receive replies from them.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  8. #8
    Super Moderator Top User
    Join Date
    Dec 2011
    Hi Sriram. We haven't heard from this poster in a long time. (The post is dated 2008.) Chances are her son is fine, and that's why we didn't hear from her again. The prognosis for oligodendroglioma 2 is much better in children than in adults.


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