Thank you for all this helpful information. I will respond to best of my memory. I did have a negitive CT scan before first surgery, however I think the ENT said it was just of the neck. ENT said he is consulting with CCC which is Karmanos Canter Institute and said he wanted to go in again and take out layers until there is a clear margins. He said that is the next step. Then he wants me to get a 2nd opinion, and do that with a Cancer specialist, which I am looking into where i would like to do that, As I have several options and really good insurance, (Thank God). I have a ton of support ( huge Italian family ) however they are freaking me out more than I care for them to.They are all internet searching and I am just still in shock, dismay and scared. My partner has been to every Dr's appointment with me and he is the only calm in what seems to be a storm. My family is going to insist I get a PET scan, which from our experience in the recent past (uncle) is the best scan?!?! Thanks again everyone for information

I can imagine what's going on! It will get clearer, calmer as time goes on. It's a marathon, not a sprint, and many will fall out of the race as time goes on. Each scan is superior for certain aspects, after certain treatments, and depends what they want to look at. Amongst its many uses a CT is good to show bone,involvement, MRI for blood vessel, nerve involvement, and PET/CT, they have in combination now, is very accurate, and good for any nodal involvement, even as small as 5mm, and distant metastases, which is uncommon at 5% at presentation. I had all three diagnostic scans, different times, but PET/CT is often preferred, and they can do more than one type of scan to assist in clinical diagnosis, staging. When I had a swollen lymph node when cancer was suspected, I had a CT scan first, the cheapest, most easily read, and widely used diagnostic scan, then had a FNAB, which confirmed metatastic cancer, then a PET/CT, which showed the primary, other areas of involvement, and then a triple scope under anesthesia with direct biopsy, to prove the primary, and other involvement elsewhere in the aerodigestive tract.

Getting back to the storm, I don't know how you want to disseminate information or how much to restrict. Some patients may want to designate a person to channel this information, some create blogs where family and friends can read it from, some may not want any information given out, some direct duties to others such as transportation, cooking, cleaning, etc. I think medical research is best done by your doctors, not hearsay, family, internet, and by reading the information supplied on OCF. There is no right or wrong answer. This wasn't problem for me, and do everything by myself lol, which is hard to do, and would say having help is better. Good luck.

Thanks for the advice everyone. Here is what information I got from pathology report. DX is invasive moderately differential SCC. There was nothing regarding if it is the HPV or not. They said I would learn more after this next surgery which I am going to proceed with. I am very nervous but going through this all is the next step.

We will be with you for as long as you want!!!

You'll be fine - best of luck with the surgery!