Mar 06, 2013 - 5:47 am
Or in less polite circles "oh (expletive deleted)
I had my second post rads PET/CT yesterday and the results were not what I'd anticipated. There is still a hot spot.
The really odd part is that the same spot was seen on my first post rads PET last October. At first they were going to take a 'wait and see' approach, thinking that it was likely scar tissue, but the tumor board recommended surgery, so two weeks after the PET, I had a selective neck dissection. Pathology came back showing a 'few remnant cells' and described them as weak and dieing. I evidently jumped the gun on NED as the new PET shows the exact same node lighting up. All I can think of is that the surgeon missed the node, or at least I hope that is the case.
I have an appt with the ENT tomorrow and I'm hoping that this is simply minor, but there is that nagging voice that keeps you awake "what if it's not?"
I see a number of potential options, none of which makes me all that confident.
It could be that they read the same images from October, but the RO did say "except for positional differences..." so my pipe dream of a simple mistake seems fruitless. The RO did say that he would recommend a more in depth procedure and he did say "modified radical dissection" and now I'm wondering what the outcome of that would be. More extensive surgery, potential disabilities, diminished capacity, permanent loss of some functions (your mind goes to very dark places in the middle of the night). Not looking forward to it at all.
It could be that this is a left over of the cellulitis and abscess that I had 6 weeks post op, but something tells me that it's not likely.
I suppose I could just do nothing, taking a 'wait and see' attitude, but I don't want that hanging over my head.
No easy choices
I've been feeling so good, great even in the last month or so. I have my old energy back, I'm traveling for work again (back 6 months), my taste has recovered, saliva is starting up again, and my appetite woke up, so much so that I"m gaining weight. I lost about 40 lbs through this journey but then again I was 40+ pounds overweight, so I'm back to rabbit food for lunch and I can actually EAT IT!
I don't want to go back to square one so to speak.
It would be interesting to see if any of the rest of my H&N family have had or heard of similar experiences.