I posted elsewhere on Friday, then realized this is the best forum for this.

Got the results of my first post-treatment PET scan on Friday. Nurse practitioner from the CCC called to tell me that base of tongue is gone (YAY!!), but that 3 neck lymph nodes lit up, with the report saying "concerning for metastatic disease". Everything else is clear Medical oncologist is going to review and talk with others before calling to discuss next steps.

Now, from other posts here and research, I know that the first PET/CT scans after treatment often reveal a lot of stuff that isn't cancer, and that false positives for cervical lymph nodes are particularly frequent. I have a lot of radiation fibrosis going on, together with some lymphedema, so lots of things could cause these findings. I also know that radiologists have to report everything and use CYA language like "concerning for." I have had a complete response to primary tumor, 39 radiation treatments, bilateral neck dissection and chemo -- making it likely that these hot spots are something else.

Logically, I know all of this. Then why am I so freaking scared?? I was reading the comics this morning, and came across the Funky Winkerbean with the simple panel of the funeral home, and damn near lost it. I think my wife thinks I am going crazy, and I have minimized my concerns to her, as I don't want or need her to deal with any more stress than she has to.

Sorry for the emotional venting, but my logic seems to be subverted to my emotions about now. Any input is always appreciated.

Oh Jeff.I may not be the best person to reply to your post,but it brought back memories of how i felt while we waited for Robs scan results in July.The fear is absolutely overwhelming,and the need to hide it from each other is paramount.He didnt want me to know how he felt,and i wanted to protect him from what i knew would be bad news.
The emotional effort required to carry this out is exhausting and draining,and as we discovered further down the line ,was really counterproductive.
The only way we survived was to sit down together and talk,and i mean about everything.the results,the possible outcomes the way we would manage the outcomes,the future,and the worst case scenario.
You are probably stressing your wife out more by not talking to her and having her wonder why you are crazy,than if you confided in her,trusted her with your fears and asked for her help.
She will be feeling helpless and confused herself,and after all the vows are "in sickness and in health".

the best of luck Jeff

love Liz

Jeff, Great news about the all clear on base of tongue. The nodes could be like you said, caused by all the treatment you have been through. It's only been 3 mos. since you finished. The nodes that lit, are they on the same side of your radiation or did you have radiation to both sides?
I want to write and tell you not to freak out, but it's so hard for us to not feel that way after all we have gone through. Still, it's not cancer till they are sure it is. Take care of yourself, and keep on venting if it helps. No harm in it at all. I'll Pray that all goes well and please keep us posted. Linda