Hey PaulB!

Thanks for your message. I do understand that a number of tonsil cancers cannot be seen. I’ve read your story and the stories of others here and even a few articles easily found via google. I’ve read it can hide within the deep tonsillar crypts. Which I’ve also been told that I have. It pains me that I know all this (because I’ve spent an absurd amount of time searching and researching), but none of my doctors are concerned about this possibility - or so none of them have brought up. It’s honestly so discouraging at this point and my continued discomfort has me depressed.

I’m suspecting, and correct me if I’m wrong, that your suspicious node that led to the biopsy was “enlarged” by clinical standards? I know you’ve said that you’ve had others that were very small... and I believe WERE malignant? The thing is, my nodes were not deemed to be enlarged by clinical standards (the largest is 9mm in the short axis... no other information on the other nodes.) I believe I can palpated 4. One on the left (side that is asymptomatic) and three on the right. None of those have noticeably changed size in 6 weeks. And none of my ENTs are concerned with them... saying they are probably just reactive nodes that may have/will be always there. I have no idea if they’ve actually been around for awhile or not... didn’t feel them until my neck started feeling funny and noticed my tonsil. My CT also noted the tonsils were bilaterally mildly enlarged but pretty much symmetrical.

It’s beginning to feel like I’m stuck until things get worse, get better and I can just move on. If this truly is TMJ, I feel like there should be more advice being given to me in the way of pain management. My jaw hurt so bad when I got home that I had to pop 4 ibuprofen just to take the edge off.

If you or anyone else knows how one might 1. find an ENT who specializes in HNC 2. convince a scheduler to fast track an appointment. I’m in the greater-Boston area. I called one of the CCC listed and they actually gave me the number of the same ENT practice I’m already being seen at. I’ve seen 2 docs at Mass Eye and Ear and one at Boston ENT which I believe is associated with Partners who operates Brigham. I believe I put a call in to Beth Israel as well. I’ll figure it out and make calls tomorrow.