Desmoplastic Infantile Ganglioglioma

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The Desmoplastic Infantile Ganglioglioma website has been created by Robin Britton to help people who have been affected by this very rare pediatric (childhood) cancer. If you are seeking support, please visit Robin on our Rare Cancer Forums.

Things I Learned On My Desmoplastic Infantile Ganglioglioma Journey

I am not a medical professional and this should not me misconstrued as practicing medicine. Please read the Disclaimer Statement on the Rare Cancer Alliance Website. Here is what I know about this tumor after reading all of the literature.

Basics

This tumor basically has two paths of progression. Either it grows slowly as is described in the earlier literature, or it grows like gangbusters and the child is dead in approximately six months.

If you can get rid of the tumor, or kill the growth fraction of the tumor it is gone for good. This is not, normally, a recurrent tumor.

Treatment

Surgery is the first treatment in every case. I can’t tell you how many times I have read that if it can be removed (resected) through surgery that is the preferred treatment. Many doctors have no other answers for treatment when it comes to this type of tumor.

Traditional radiation is usually not an option. These tumors are very large and the children are very young. Generally the large area that will have to be radiated in a developing brain will turn these children into vegetables. One strategy doctors use is to try to keep the kids alive long enough to do radiation later in life, 3-5 years old. I personally will not let my daughter have radiation. It substantially lowers mental abilities in younger children, and it can cause secondary cancers.

Chemotherapy is a traditional therapy that is a viable option. My daughter started on the Pediatric Oncology Group (POG) standard “Baby Brain Protocol”. That is what they start infants on when they have no idea what else to do.

Recommendations

When your child has the initial surgery have tissue samples sent to a lab for chemo-sensitivity testing. This tumor is different than most in that there are no proven chemo treatments. If you test the tumor to find out which chemo drugs affect it, then you chemo protocol won’t be a shot in the dark. There are quite a few labs that do this sort of testing and I am sure you can find a local one through people on the acor rare-cancers list.

Get second, third, and fourth opinions on how your child should be treated. Visit lots of different cancer institutions. If you have a rare or weird cancer they are happy to see you because they think they can publish a paper about your child. One of the places that we visited was MD Anderson Cancer Center in Houston. I do not recommend it, it is just not a place for kids. It is however good to see the spectrum of attitudes and treatment strategies.

Find a Pediatric Neuro Oncologist to be your child's primary oncologist. There are so many things specialized to the central nervous system and cancer, don’t take a chance by getting general treatment. My daughter has partial loss of hearing because of this. My daughter’s doctor is Dr. Sri Gururangan at the Brain Tumor Center at Duke University in Raleigh, North Carolina.

Get in touch with other families with this type of rare cancer and see what treatments they are having. It is also good to know that you are not the only family out there. Join us on our Rare Cancer Forums.