Ok - Friday I ended up with Dan's chart for about 45 minutes so I read everything in it. 99% of it I knew and had made notes on and/or had copies of myself. But the one thing that surprised me was the PET Scan results. The stuff they told me - lungs clear, etc. normal uptake in the areas where the surgery was (scan only a few weeks after). But at the bottom it listed a metabolically active node... I read this after seeing the MO(while waiting during chemo). I walked back over to the doc "area" and he was gone for the day. I believe, based on what I read, that a metabolically active node = cancer. And I know they only took out 30 nodes (4 positive)... so I guess this means there are more?? And are nodes like tumors that they have to be so far along, etc. before they even show up. So this would increase the likelihood that there is more metastases? And why haven't they told us this? This particular node I am now concerned about is in the radiation field, but still. So I know you guys can't dx him - I am mainly just frustrated and thought I would "share" my thoughts.

Michelle,
From your signature I gather that Dan just recently finished IMRT.
Metabolically active means that it accumulated glucose.... but that does not mean it is cancer. There are many reasons why there is an uptake:
Exercise, inflammation, scar tissue etc. This especially since he just finished rads. Enlarged nodes and some activity especially this close to the treatment is not all that unusual.
Before you go nuts consider the above and call the MO (why not RO?) on Monday to get their take on this.

Markus

Markus

Michelle --

If you research my posts, you will find one in October of last year, after my first post-treatment PET scan. I could not wait for the doctor appointment, so went over to the medical center and got a copy myself.

I was devastated to read that there were 3 "hypermetabolic lymph nodes concerning for metastatic disease." I had begun treatment with 1 positive node that had been removed during my neck dissection.

I fretted and stewed for what seemed forever until I got to the doctor, who dismissed it as artifacts of treatment. The RO did the same thing, and the follow up PET showed that 2 of the nodes had dropped off the radar, and the third was at a lower SUV.

As Markus said, there are lots of things that can cause elevated SUV values in a PET scan, so much so that many doctors refuse to use them as any sort of gold standard for post-treatment follow up. Talk with the doctors, but there are tons of cases on the boards of false positives in the PET scans.

Hey guys thanks for responding - I think I didn't make it quite clear in my original post. This was the post-surgery, pre-treatment PET scan. Dan is still undergoing treatment - he's got about 2 weeks left.

I am of course still going to call the doc, but my assumption is that since there are so many things thta can cause that "reading" - that perhaps that is why they didn't bother to tell us. I don't know, but I am slightly miffed to have not been told. I am very detail oriented and like to understand fully what we are facing.

Again thanks for responding.

luvmyhubby,
What the others have said is accurate. It could be many other things causing it to appear different including the normal healing process. Your diligence and attention to detail is certainly a benefit to Dan. He is lucky to have your love and support.
I am impressed that it was mentioned. In many reports that I have come across remaing nodes outside of the surgical area are not even commented on. If you are concerned and want clarification ask one of the docs. It is, in my opinion, being monitored which is a good thing.
My thoughts and prayers are with you.
Cheers,
Mike

Hey guys you are all so great to respond and offer these positve and supportive thoughts. But I still feel like we're not fully on the same page. This node was outside the parotidectomy & neck dissection area and was seen on the pre-treatment PET scan. So... it shouldn't be anything related to radiation nor healing. Or at least I wouldn't think so.
And yeah - it's being monitored and we'll talk with the doc about it Tuesday morning. It is in the radiation field so my hope is it's being taken care of. But of course I worry - this cancer being so rare and so aggressive and the intial metastases, etc. I guess basically we just hope that treatment is taking care of it - if it even is/was anytghing and that we will know for sure after the post-treatment scan(s).

Anyway - thanks for "bearing" with me on this one.

Hi Michelle,

I had a node misbehaving on my first CT scan post surgery. They noted it, monitored it and gave me a second CT scan but dismissed any concern as an active node is not unusual after the body has withstood the trauma of surgery. Next scan, she was gone (I name any recalcitrant nodes so I can chastise them and they'll go away, lol). I not sure when you say pre-treatment if the PET was done post-surgery...so I'll share this info anyway. I assume it was post-surgery or they would have grabbed the node it would seem. Bet you can't wait for Tuesday a.m. to find out.

I don't have much of a medical background but it seems to me that even if this node was not in the area of the surgery but maybe below it, if the PET was done shortly after the neck dissection, that node would be affected by having 30 lymph nodes above it being removed--the lymph channels leading to it would all be changed and then there might be more activity there just from the effect to the lymph pathways of having surgery. My guess is this is why the doctor didn't tell you about this. And, as you said, since it is in the field of radiation anyway, if on the off-chance it was due to cancer, the radiation should zap it.

Nelie

Yeah I was meaning pre-treatment as in before radiation and chemo, but post-surgery. I like that you name them - i'm going to try that. LOL

Nelie - that makes very good sense. Thank you - I have been trying to come up with a logical explanation in my head and that one works for me :-).