Apr 15, 2001 - 11:23 pm
I was diagnosed last Tuesday with esthesioneuroblastoma (essentially, "sinus cancer").
I developed breathing problems (couldn't breathe through right side of nose) during my pregnancy with our daughter in August, '99, and was told that I had polyps in December, '99. Things got better after Andrea was born, so (for a variety of reasons) I put off doing anything about it. When I finally saw an ENT in November, 2000, he told me that it wasn't a "normal" polyp, and sent me to the University of MIchigan for a second opinion. The surgeon was fairly confident at first that it was benign, and it was removed on April 2, 2001. However, the pathology results showed that it was malignant. They had removed the vast majority of it, but the "root" still remains attached to one of the interior bones under the bridge of my nose. On April 27, I am having that bone and the remainder of the tumor removed.
I guess the main reason I'm here (other than to vent) is out of frustration - I have found virtually no information on this type of cancer. It is apparently quite rare, slow growing, and not prone to spread or recur once the root is removed (I was told this by my U-M surgeons). However, There is NOTHING on the ACS website about this type of cancer, and my internet searches haven't turned up too much info.
Does anyone out there know anything about this type of tumor?