Elifsu has a tumor in her belly with the NMYC gene, growing from her adrenal gland. It is a High Risk stage 4 tumor. The medical name is Neuroblastoma. Neuroblastoma is a malignant cancerous tissue (tumor) stemming from a certain type of nerve tissue. This nerve tissue is called the sympathic nervous system. This system consists of a bundle of nerves running from the brain through the spinal cord to the pelvic bone. These nerves control blood pressure, hart rate, the activity of the intestines, bladder and other organs in the belly. The adrenal gland is part of this system.
How often is neuroblastoma diagnosed?
Approximately 1 in 100,000 children per year are diagnosed with neuroblastoma in The Netherlands. This means on average 25 children are diagnosed with neuroblastoma.
What causes neuroblastoma?
The immediate cause of neuroblastoma is not known. Somewhere during the development of the embryo in the womb, something has gone wrong, resulting in the neuroblastoma growing from the adrenal gland. During the development from an embryo to a fully developed baby a lot of things happen to the cells. At certain times cells have to split and at certain times they have to stop splitting and develop into the type of cells that have to perform certain specific functions. This is all controlled by certain chemicals. In children with neuroblastoma something goes awry during this phase. Cells do start but don’t stop splitting. The reasons for failing to stop splitting are not yet known, but irregularities in the DNA passed on from the parents are sometimes found, some types more often than others, but how these irregularities come into existence is not known.
What is the prognosis of neuroblastoma?
The prognosis for a neuroblastoma depends on a number of different factors. Important factors are the age of the child, the size of the tumor, whether or not the cancer has spread to other regions and the possibility of removing the tumor in one go during an operation. Also the image of the tumor under the microscope and the changes in the DNA of the cancer play a part in this. Small tumors that have been removed without having spread to other regions have a very high chance on full recovery. With larger tumors that have been intensively treated the prognosis is very good to, 8 in 10 will fully recover. In case the cancer has spread to other regions the prognosis is a lot worse, even after intensive treatment only 2 in 5 will fully recover, 5 to 8 in 10 will not survive this kind of neuroblastoma.