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The doctors told us that Nina's tumor measured 5 cm on the CT scan. This was roughly the size of a golf ball. Nina's tumor was found above her right kidney on her adrenal gland. This region is part of the sympathetic nervous system. The oncologist told us there were three things the neuroblastic tumor could be:

1. Ganglioneuroma- A benign tumor consisting of mature ganglion cells.

2. Ganglioneuroblastoma- Ganglioneuroblastoma is a tumor that has both malignant and benign parts. It contains neuroblasts (immature nerve cells) that can grow and spread abnormally, as well as areas of benign tissue that are similar to ganglioneuroma.

3. Neuroblastoma-  A malignant tumor that is very aggressive

Since Nina's diagnosis, I've heard ganglioneuroblastoma referred to as "The best of the worst." A ganglioneuroblastoma may be localized to one area or it may be widespread, but it is usually less aggressive than a neuroblastoma.

Frequency

Ganglioneuroblastoma is a rare tumor that occurs in less than  5 out of 1,000,000 children per year.

Symptoms

Often a mass is felt in the abdominal area. Sometimes ganglioneuroblastomas can occur in other areas of the body. Depending on where the tumor is located, some patients complain of pain, irritability, weight loss, or shortness of breath. Nina did not have any symptoms.

Cause

The cause of neuroblastoma and ganglioneurblastoma are unknown.

Treatment

A ganglioneuroblastoma is treated the same as neuroblastoma because it does have the potential to spread. Depending on the stage of the disease, ganglioneuroblastoma may be treated and removed with surgery alone. More advanced stages may require chemotherapy and radiation treatment.

Testing and Scans

Nina's tumor was orignally found during an ultra sound that was scheduled to determine whether or not she had kidney reflux.  Talk about divine intervention. The tumor was confirmed by a CT scan of Nina's abdomen. Once the tumor was surgically removed and diagnosed as a ganglioneuroblastoma, more tests had to be completed to see if the disease had spread.

Nina was put through the standard testing protocal. 

Urine Test  to check for catecholamines which are hormones that the body often produces when these tumors are present. Here were Nina's levels:

           1/28/08   HVA- 341     VMA- 97 (Before Surgery)

           2/7/08     HVA- 12       VMA- 7 (week after sugery)                                                                      

Bone marrow aspiration and biopsy

CT scans of the chest and pelvic region

Bone Scan This tests involves an injection of nuclear medicine.

MIBG This is another nuclear medicine test. It is performed to look for neuroblastoma in the soft tissue of the body.


Nina was sedated during the bone scan and MIBG.  This is because she had to lay completely still for nearly two hours.  Older children may not be sedated for these scans.


Nina's cancer was diagnosed as stage 1 ganglioneuroblastoma.  This means that the cancer was localized and removed through surgery alone. Nina will still be visiting the oncologist every 90 days. They will do a urine check and send her for a CT scan. These appointments will hopefully be staggered into longer intervals as time goes on.


Credits

Some information on this page came from the following websites:

http://www.nlm.nih.gov/medlineplus/ency/article/001436.htm

http://www.emedicine.com/radio/topic293.htm