My niece was diagnosed with a bilateral optic glioma at 6 months old. Because the optic nerve is wrapped around the tumor, they did not biopsy, so they don’t know if it’s cancerous (malignant). She went through an experimental protocol of chemotherapy for 1 ½ years, which arrested the growth of the tumor. This past May, however, a routine checkup showed that a portion of the tumor showed 2-3 millimeters of growth. My brother writes: “If you think of the optic nerve, it runs from the eyes to the center of the brain where it crisscrosses and ultimately ends up on the other side of the brain. The crisscross area is called the chiasm and the back sides away from the eyes are called the radiations. The tumor runs from the eyes through the chiasm and into the radiations. This is very rare for this type of tumor as most of the time only a small section of the nerve is affected. Hers is more extensive. The growth we have found occurs in one of the radiations.” Another recent scan has shown that the area has increased another 2-3 millimeters. So far there are no outward signs of symptoms (ie, headaches, etc.) She does have some vision loss which was there throughout chemo, but it appears to be stable and unaffected by the growth at this time.
Currently, my brother’s family has three courses to choose from: 1) another round of chemo; 2) radiation; or 3) surgery. My brother is reluctant to do another round of chemo as the first round had an effect on her motor skills (which they thought would be temporary, but now seems permanent). Additionally, they are getting conflicting information regarding radiation (one doctor told them that if the tumor is not currently cancerous, after radiation, it would be).
So our question for this forum is: Has anyone had any experience or knowledge of surgery in this type of situation? Does anyone know of a neurosurgeon who might be able to consult in this situation?
Chemo is pretty hard on the body - plus there is a limit.
Radiation has the risk of damaging the optic nerve, and surrounding tissue, but is less invasive. I have never heard of a tumor becoming cancerous after radiation. I have a tumor on my pituitary and I may need radiation - but no one has ever told me that. Ever.
Surgery would have to be done by someone experienced, with an endoscope. I would look for skull base surgeons, maybe people that have done a lot of pit tumors as they deal with tumors wrapped around the optic nerve and the carotids so they are already careful.
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