Well....information is trickling in weekly. The little spot on my pharynx is NOT on my pharynx, but my nasopharynx...and it may or may not get biopsied, as the area has been radiated before, and unless he sees something he's leaving it alone (I didn't learn this until I pre-registered at the hospital). My new ENT seems to have trouble laying things out...as he could have told me ALL of this in one sitting, the day he called me with the PET scan results.

DonFoo....you know me well, it was great talking to you the other night. I'm a wreck, of course....not so much the neck dissection, but if I wake up with a biopsy, then I'll know he saw something...and that ain't good. Of course, then I'll have to wait for the pathology report...another nerve-wracker.

Having a hard time staying in the day...I keep future tripping...getting scared, then reeling my mind back into this day, only to have it snap back out into the future again. This has been a HARD DAY!!

p

The 1 thing I learnt from our recurrence is Not to borrow sorrow from tomorrow.
Your mind is taking to you to some scary places. Don't let it. A counsellor I saw told me that when my mind went to the dark places to literally shout at myself
"STOP" then think of something happy/good. Funnily enough this worked for me.
At this point you and your Team dont have all the information needed to formulate a treatment plan. Be patient. Once you have the plan in place I know you will relax .
I don't know if you have considered a 2nd opinion or if you are wing treated at a CCC. Please consider both of these. You want to be treated by the best for the best outcome for you
Tammy

Ok....surgery is done. They took out 32 lymph nodes, 3 of which had cancer in them....and 2 of those had extracapsular extension...meaning they were opening up to pour their little contents into my body.

Saw the Radiologist last week, he feels that the radiation range of this cancer is below the last time...he will know for absolute sure when he does the simulation.

Saw the Oncologist yesterday....he doesn't want to give me chemo...he said in his research he could not find a single justification for putting my body through it again. BUT, he is sending my file off to the Univ. of Washington, Seattle Cancer Care Alliance and see what they say.

I don't know how I feel, I should be reveling in the fact that I don't have to do chemo...but I don't get why finding a recurrence of nasopharyngeal cancer in my lymph nodes so astonishing. He said a NPC recurrence is rare, and to have one in the lymph nodes with it no where else is one in a million.

p

I'm glad you've had the nasties out but sorry there is uncertainty about the treatment. Sounds good that the RT won't clash with previous radiated area.

I get what you say about the oncologist's astonishment. We human beings don't always fit into the stats, do we?

How are you feeling physically? I've never had a neck dissection without all the other reconstructive surgery in my mouth so don't know what one on its own feels like.

All my best wishes.

You do need to get that second opinion. As this is a recurrence, and a rare one, you need to get to a Center of excellence. A Center that treats unusual cases on a daily basis. Please consider getting a second opinion from a CCC.
I too would be worried about the no chemo, but I am not a doctor. I would be worried about mopping up those stray cells that have escaped.
There has been research done that shows where you are treated matters. If you can do a CCC, please consider this. Hope you get a plan in place soon.
Tammy