I finally got the call from my oncologist today and it's kind of unnerved me, mainly because it leaves me with more questions and my ENT won't be back from vacation for 2 weeks to follow up with me.

She informed me that the scan showed no masses or tumors however I do have several spots of heightened activity in several spots, right and left mandible, left base of the skull, right tonsil and back of the throat.

From what my oncologist told me, the "normal" readings are around 2-2.5 where several of my spots rated between 3-3.5 and she felt that I needed to schedule with my ENT to get checked out. Since I have no idea what this means and now I can't see my ENT for two weeks, I'm a bit nervous...actually a little scared.

I know it's not cancer until they say it's cancer so I'm trying not to get too worked up. Any good words or insight would be very much appreciated.

Eric

Hi Eric- I 'm so sorry that your oncologist is on vacation and you can not meet with her for two weeks. Try and remain calm until you hear back from all of your doctors and get thier opinions. The whole head and neck has withstood a lot of harsh treatments.I've on;y felt sort of liek my old self for the past 2-3 months. My neck and base of skull were unbelievably stiff from the surgery and radiation. Are you in any pain at all? I woudl meet with your ENT as soon as you can so that you can put your fears to rest.


Thinking of you. KATE

Eric, Im very sorry you did not get good conclusive results today. PET scan are known for false positives. Its happened to me and scared me so much. Hang in there, you know it will be a while before you can see your ENT. Be patient and try your best not to let cancer steal your time away from you.

Everytime I start feeling badly about how things are currently, I say someting to myself that snaps me out of it. I tell myself "you have lived thru much worse and are still around to tell about it". Helps me to keep things in perspective.

As Tom Petty says, "The waiting is the hardest part". I know patience is sometimes not easy to come by but I'm sure you'll hang in there and get good news. I wish I could tell you what "heightened activity" means. Sounds pretty vague.

It means that there is more sugar-based absorption at some locations than at others. That's why a combined CT/PET scan is good; areas of activity in the PET can be immediately looked at in the CT to see if something unusual is showing up.

All of the treatment you have received impacts the tissues and these can show as hypermetabolic spots in a PET scan. I had a post treatment PET with some areas around 3.4, and my ENT/Surgeon and RO basically laughed them off. Had a follow up exam a couple of months later, and they were better.

Don't get overly stressed about it. I did, and it all proved to be for nothing.

Eric
PET =Perhaps Effacious in Theory
I know your fear, but here is my true story on PET/CT scans. In retrospect it's funny and the punchline is that PET scans scores like yours are probably nothing at all.
My MRI in 1/08 was clear but my world collapsed when my PET/CT in 5/08 came back with SUV scores of 4.5 on the RIGHT side of my tongue base and the impression was "metatastic disease cannot be totally excluded". The cancer had been solely on the LEFT side (tumor and lymph nodes). I panicked and my ENT's palpitations did reassure me. I complained to the head of the PET dept and he reviewed it and said it was probably postradiation changes. The PET/CT in 10/08 showed the RIGHT side of the tongue had skyrocketed to SUV of 5.7 but a reassuring impression of "this finding less likely represents in my opinion recurrence of cancer" So when my MRI in 1/09 came back "imaging findings: recurrence of LEFT tongue neoplasm..", I was crushed. Major surgery a month ago and pathology report confirms it was the cancer back again
So both my PET/CT were not only false positives, they both completely missed the recurrence. My ENT surgeon looked long and hard at my Right side when I was spread open and could find nor see nothing out of the ordinary.
It was my ENT who first got worried in December 08 on feeling my tongue. It's hard, I know, but take a deep breath and relax. Have your ENT rigorously examine you and go with that.

Thank you guys so much for the insight, I love having the input from people that have been here, it is so invaluable to me.

I feel a bit more relaxed after all of your posts, it's easy to say I'm not going to worry and much harder not to do so, but with the input above it's easier to relax until I talk to my ENT.

Thanks everyone.

Eric

When I had scans at Ohio State James CCC before and after surgery, my scans kept showing flashes. I made 2 or 3 trips to Columbus to redo them. They still showed the flashes, but it came down to false positives. Even modern day can get things wrong and make us worry. Good luck Eric and keep up those true positive thoughts you seem to have .

Eric,

I guess I question why the Oncologist would send you back to the ENT? Why wouldn't the Oncologist do a biopsy or two herself? The general rule of thumb with Pets is anything less than 3.0 is usually not suspected but like everything else, it's not absolute. You know the game...squeaky wheel gets the grease...so if this is troubling you then be the squeaky wheel.