Jan 31, 2010 - 11:01 am
I had a lymph node removed from my upper right neck on January 20th. I learned on the 27th that it was a "metastatic poorly differentiated squamous cell carcinoma." I've been scoped three times, and my ENT Doc still doesn't have any idea where the primary tumor is located. I admit that I am beginning to lose faith in him, as things seem to be moving forward way to slowly for my comfort. He got the biopsy results back on the 21st, saw me twice in the interim, and didn't tell me. He did not ask his staff to schedule a PET CT scan until the evening of the 27th, and on the 28th we learned that it may take up to 5 working days to get permission from my insurance company. And, he will schedule the next appointment to see me some time after that scan is done. Why was he not asking for this on the 21st? He admitted being puzzled about the fact that it was a head/neck SCC and I was a non-smoker. Hey, he's the doctor. Took me just about 15 minutes on this site to get a pretty clear idea about the significance of HPV in my diagnosis, treatment and prognosis. My husband and I both have a history of HPV infection and treatment. I consulted with my own GP, who had to hunt down the biopsy even though it was supposed to be sent to him. He was the one who told me about losing my teeth and the feeding port. Yuck. I'm chasing after an integrative medicine, nutritional specialist who is not accepting new patients, but my GP promised to get me in. I contacted my own dentist, who does twice-yearly oral cancer screenings with my checkups, and scheduled another screening for first thing tomorrow. We'll be discussing the tooth loss issue. I'm putting things in motion at work for FMLA and disability leave. I even sent an email to my ENT late last night, telling him to have my excised tumor tested for the presence of HPV. No reply yet. It seems like everybody has been falling all over themselves to get this thing moving, except my ENT. Or, is this just one of those time dilation things, where I am moving so fast that it only seems like everyone around me is going in slow motion? It is worrisome that I had to put this together all by myself. Is this the way it's supposed to go?