Suzanne,

Sorry you are here, but I know you will get a lot of help, advice and support here. I couldn't do this journey alone and am so grateful I stumbled on this site.

When I was first diagnosed it was as a CUP. I had a lump on the left side of my neck which was needle biopsied (FNA) and it came back suspicious. I had a left neck disection surgery which removed a 3cm node along with several other items like tonsils, salivary glands, nodes etc... The only thing that came back positive initially was the one 3cm node. In addition while I was under GA they did a whole lot of biopsies on other areas, but couldn't locate a primary.

After my surgery I had a pet scan that lit up the entire back of my throat, but they attributed most of that to healing/trauma from my tonsilectomy and biopsies. I was uncomfortable with the local hospital so I traveled to a differnt facility. Once there I went under GA again with a different ENT, she was was able to locate a small malignancy at the left BOT. In addition another set of eyes on the original CT/PET scan also read it differently.

I was relieved that they found the primary because before I went for 2nd opinions my 1st RO wanted to use an older linear RT and radiate the entire oral cavity and both sides of the neck. Once the primary was discovered it allowed for a more focused IMRT and subsequently less collateral damage.

We are all differnet and present differently, this was just my circumstances. You don't say what facility your husband is scheduled to get his treatment at. The only advice I would give you is; get a 2nd opinion from a comprehensive cancer center if he isn't being treated at one now.

God Speed
Tim