Pediatric Oligodendroglima patient

    
      Re: Pediatric Oligodendroglima patient
    


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Posted by CCF Neuro MD on July 24, 1997 at 09:19:21:

In Reply to: Pediatric Oligodendroglima patient posted by Debbie on July 14, 1997 at 04:20:40:

: Our daughter is 7 years old,  she was diagnosed with a grade 2/3 oligodendroglioma in the left peridle, moter strip, comprehension, and speech area. She started in Sept. of 94 with seizures. She had surgery in Jan. of 95 and was perfect. There were no deficets. Aug. of 96 she started to have simple partial mini seizures. We knew it was back.  Feb. of 97 she had her second surgery. There is still a very small amount left in a very delicut area. Our Kaiser insurance wants us to do Radiation and Chemo.  She didn't fair as well after this last sugery, we are afaid of more brain damage with the Radiation. I have been told that the Gamma knife has the same amount of radiation given in one treatment compared to 6 weeks of radiation.  I also heared their isn't the brain damage compared to standard radiation.  She will have an MRI in 2 weeks and I was told she might be a canidate of the Gamma knife.  Can  Chemo be given after a gamma knife treatment?  Dr.Friedman of Duke  would like to do a chemo treatment, a protacol they have been working on.  Are there any  children in the United States with this tumor and are there other children being treated now and who are they?  .I am having a hard time finding doctors who have and are now treating pediatric patients with this tumor. Please contact me at ***@****.    Debbie
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Debbie,
   your daughter certainly is not the only child with an oligodendroglioma on the US.  There are many children with the tumor being treated at any of the large medical centers around the country.  Here at Cleveland Clinic also, we have some experience with these tumors.  
First of all, I am sure you and your family have learned by now that treatment of any brain tumor has to be highly individualized and varies based on age of the child, location of tumor, effects produced by the tumor (e.g. seizures), pathology of the specific tumor, its level of aggressiveness, its individual pattern of growth and size and spread of tumor at the time of presentation- just to name a few things.  Thus there are many ways to approach any patient with a tumor and we encourage multiple opinions so that the patient and family can find the most appropriate therapeutic options that they are comfortable with.
Your physicians have certainly taken a very appropriate route, opting for surgical interventions first.  As you have mentioned, radiation and/or chemotherapy are the next step if surgery is no longer a safe option according to the surgeons.  In a 7 year old child, our preference usually would be to opt for chemotherapy rather than radiation as the safest choice, with concern about the effects of radiation on the young brain.  Dr. Friedman at Duke is experienced with treating pediatric brain tumors and it is fortunate that he is available to you as a resource, with a chemo. protocol for oligodendrogliomas.
Again, there are many ways to approach these tumors- I would encourage you to seek many opinions and find the doctors you are most comfortable with, and who are attentive to the needs of your family and your child as well as experienced in treating the tumor.  
I do not know of a specific support group for pediatric oligodendrogliomas.  But the Brain Tumor Foundation for Children (Atlanta, GA)or the Children's Brain Tumor Foundation (Pleasantville , NY) among other national brain tumor foundations may be able to help in this regard.
Best of luck to you and your family.