About MNETI
Melanocytic Neuroectodermal Tumor of Infancy
This page is meant for people looking for information about Melanocytic Neuroectodermal Tumor of Infancy (or MNETI), a rare, typically benign, tumor found in infants. When Sara was diagnosed with it, we searched the internet for days in an effort to find something about it. We really didn't find much - especially for cases that present outside of the head and mouth since over 90% of cases do present inside the head or mouth. Then, finding other cases that were malignant were next to impossible.
As far as we can tell, Sara is the 120th (ish) clinical case of the tumor and only the 6th case that is malignant. (Note: These numbers are just what we were told - I can't guarantee the accuracy.) This tumor is very rare and even more rare to be cancerous.
The good thing about this type of tumor, malignant or benign, is that it is not very likely to spread throughout the body. The concern is that it is known to aggressively grow. We saw the tumor double in size in about a week. During this time, the tumor also worked it's way into Sara's bicep muscle, requiring the doctors to remove part of it. Once the tumor is found, surgery is an appropriate treatment. Even if the tumor is malignant, no chemo-therapy or radiation-therapy is needed, nor will it work.
All of Saras treatment was done at UMass Medical in Worcester, MA by a brilliant team of doctors lead by Dr. Anthony DeRoss (Whom I would recommend to anyone and everyone - he was absolutely amazing). We met with Boston Childrens Hospital, Dana Farber and even called St. Judes - all of whom had never dealt with, nor seen MNETI. The oncologist, Dr. Keuker, has dealt with it in the past, as well as the Plastic Surgeon, Dr. Lalikos, who consulted with Dr. DeRoss before Saras second surgery. The team in Worcester, MA was backed up by doctors at Dana Farber, Boston Childrens Hospital and other Boston based hospitals.
Please feel free to contact us if you have any questions or if we can help in any way, even just to talk or listen. We know how it feels to find out that our child has a rare disease and not be able to find much information out there. That's why I built this page, that's why we're making ourselves available. And remember, this can be beat. One smile at a time.