Introduction and a couple of questions

 Welcome to the H&N Group, but sorry you need to be here. With stage IV BOT and it had gone to a few lymph nodes, is why it was IV is the lymph nodes. If it had not gone to some most likely it was a T2 or T3.  You asked why not scan the brain? Head & Neck SCC  if it spreads, tends to go to certain places first. Lymph glands, thyroid but radiation seems to damage the thyroid and parathyroid on its own. It can spread to the lungs also. These are the most likely places it will go to. Has it gone to the brain, yes, but I know of only one and she fought cancer 10 times before it did go to her brain. Terrie was an amazing lady and fought more than anyone I know of. She beat it 10 times and lost on 11. She had 48 radiation treatment and almost a year of chemo, and then had to have a laryngectomy. At 40 she had Oral cancer, then throat cancer, and it took quite a toll on her.

You asked if it was possible the PET/CT is negative is it possible some are still there? Anything is possible as there are no guarantees, but it is Very unlikely. You see what the radiation does is scrambles your DNA so even after you are done with radiation your DNA is scrambled and if the cells divide they can't multiply and form anything, so it can't grow if they divide.  It is more common to have a False negative show up, especially if it was done soon after treatment, say in the first few months. This is something almost everyone will have in the back of your mind once you are told by a doctor, You Have Cancer. That is normal, many have PTSD, Anxiety, even a panic attacks for a while. and this too is normal if you get them. It is just life, and we have to accept it and have it treated or it can really get bad. It by no means someone is week, or still has some fear, that too is normal. Not dealing with it or doing the denial route will just make it worse and much harder to deal with. 

They thought I was a T4, N2, M0 before surgery [stage 4] but I got lucky and was T3; N0; M0 stage 3, SCC Supraglottic which is just above my vocal cords, but it had not gone to any lymph glands. My Lungs were bad so my only choice to live was to have my larynx removed and breathe through my neck. Also do a neck dissection on both sides as a precaution and they took 86 lymph glands, as a precaution. The surgery removed all my cancer and I never had to have radiation or chemo, just took my voice, but with the TEP Prosthesis, I have it back just sound hoarse.  Now I have Sevier COPD and can get [and have] a panic attack and feel I am not getting any air which will raise my heart rate to 135+, and yes it is scary as hell. Now add that I breathe through a hole in my neck and most everyone in the medical profession has no idea how to treat me or even get oxygen to me can be a little unnerving at times.  My surgeon trained me on what I need to tell the ER on how to treat me, so all is good.

Now last you said, " Not really interested in any pharma solutions either" I can understand this, but sometimes we have no choice. I have to take several to breathe, I really like breathing. I have pain from the surgery where they cut me from ear to ear and removed my larynx, and had bone spurs as well. It is hard to fully turn my neck as everything was cut, so I have muscle relaxers and have full use of my neck. Now best of all, I am alive, and only five thought I would live through this. In a strange, very strange way cancer saved me and I will live longer. I now breathe much better and the doctors no longer want to remove 30% from each lung. So for me, life is good.

Sorry it is so long, but really wanted to answer your question and explain the why.

Bill

I am a trial lawyer and wrestling coach who have never had any mental health issues.  I even lost a child 10 years ago and was able to work through that without the assistance of a professional.  I consider myself very strong mentally and can handle losts of stress.  I recently saw a psychiatrist through my cancer center because all of the sudden (during recovery) I started having anxiety.  I got my first NED scan last month and I am slowly recovering and feel pretty good.  Dr. told me I am "over driven" I don't do well sitting around the house.  Once I get back to work, working out daily (which I did before I got diagnosed) and get back to my life he said he would bet it all goes away. In the meant time he gave me a very low dose of anti anxiety meds until I get my life back.  Its working for me.  Its a very low dose so  I have no restrictions on my life at all. Frankly I can't even tell I'm on anything, but I don't have the anxiety.  This week  I started back to work and even forgot to take it one day.  Doesn't hurt to go talk to someone.  Good luck. 

the club nobody wants to join.  I was in treatment 4 years ago at this time....I was fine for a year (except at scan time) as far as nerves and stress over a recurrence was concerned.  But as time passed I seemed to get more anxious.  Other things were happening too, of course, but by summer at almost 3 years out, I was riding an edge than just never went away from morning till night.  I was not having any fun ever....I felt like my antenna's were up and ready to see anything coming my way.  My Dr. gave a script for some anti-depressents/anti-anxiety meds.  It took me a week to even take one....I too, didn't want a medical answer to what I thought I should be able to work out myself.  Guess what?  I feel normal again...I'm loving life, enjoying my husband and friends, I even sleep in now and then.  All the meds did were bring me down from the edge....everything else is as it should be.  Everytime I see my Oncologist I thank him over and over.  The depression and anxiety were sneaky...and what started out as small just grew out of control.  I'm not a nut case, honest . 

p

Gregg my name is Mike and a Nurse once told me that my life would be completly different after the treatment both metally and physically and I did not beleive her, I am 3 years out and the cancer has made changes in my life. Sometimes I run into people that i should cknow and cannot put a name with the person or where I know them form. I was told from another cancer suviver that after the chemo she stills has a chemo brain 5 years out. I accpet the changes and beleive that it is no big deal at least I am looking at the green grass and not beeing under it. I had to change my job and tried to go back to school but did not work to well for me now I am able to return to what I use to do. I guess the short and sweet of it is that I am happy to be alive. Thank you GOD