In follow up to the prior discussion, got my PET report today. PET was done about 80 days after treatment.

PET showed no activity at the BOT, which is great. It showed three nodes, 2 on right and one left submandibular, with SUVs of 2.7, 2.7 and 3.2, which the report says are "concerning for metastatic disease." Have not talked with doctor yet.

Given our prior discussions, I am not freaking out yet. First of all, I am suprised that I have any lymph nodes left in my neck after my bilateral neck dissection. Secondly, false positive PETs after radiation treatment are common, and I have a lot of neck fibrosis going on.

Anybody have a similar experience with their first post-treatment PET?

Jeff,

I think your attitude is commendable. I haven't gone through what you are going through, but if I did, I hope I could be as level headed as you are. Hopefully someone with s similar experience will come along here post something helpful for you.

Tim

Jeff, I had my own scares with the PET scan just last month. Had me convinced it was in my lung AND that it was in my lymphnode. Ended being nothing in my lung but scar tissue and my doctor at John Hopkins didn't do a neck disection because he felt NO node and he didn't trust the PET. Hope this helps you relax a bit about it and hope that your results are just as false as mine!
Minnie

Thanks, Minne. Believe me, I am keeping my fingers crossed. I had my follow up with surgeon and his team of residents the day before the PET. They did the usual squeezing of my neck, looking down throat,etc. and gave me clean bill of health, with the exception of the radiation fibrosis and lymphedema, which they indicated I should probably just get used to having.

I'll keep everyone posted as things progress. Geez, it's always something . . .;-)

From what you're saying Jeff, it sounds like you're going through exactly what I did. None of the docs want to be difinitive about anything, they have to cover themselves, so it leaves you hanging in a limbo of fear for a few weeks. It truly sounds like you have scar tissue (I call it scare tissue now, lol). My reports read as if I would be dead in a month, truly, they were SO frightening. The PET report guy even said "this are suspicious of malignancy". But it wasn't, there was NO cancer there AT ALL. He just had to report the most serious thing it could be is my take on it all.
Let us know as soon as you find out.
Minnie

You are so right. I used to practice law, and represented doctors in medical malpractice cases. The CYA mentality caused by litigation has increased the cost of health care tremendously. "Better a false positive than a false negative" could be the new medical motto. If you tell someone they might have cancer, and they end up not having it, they are grateful. If you tell them they don't, and they end up having cancer, they are pissed.

Such is the way of the world . . .