Hey everyone. Some of you may know what's going on but I'll make a quick update. I had a pet at about 6wks post tx. Obviously that was a little soon but it showed low grade uptake in the lymph node that remained in my neck. A decision was made to do another scan at about 11 wks. I did it 0n 6-01 and got the results yesterday. The results were the same. Low grade uptake that is more than likely inflamation but cannot be ruled out as cancer. I had hoped the results would be decisive one way or the other. so anyway now the decision is on me. For some reason I am having real difficulty with this.

I can opt to monitor it and see if the inflamation goes away if that is what it is but we all know the downside if it is cancer. The other option and most logical is to go on with the neck dissection. Because of the order of my treatment there is more scar tissue than to be desired for a fairly easy dissection. Please understand that logic and the desire to be aggressive is what I've believed in with all of my treatment. But with this decision, all the logic in the world is not making that feeling in my gut of "don't do the surgery" go away. I am really struggling with this and simply wanted to share it with you guys. I'm praying about this decision and trust my docs to help me with it. It's just eating my lunch and I need to make the decision so I can move on. Thanks. Lee

Lee, do you have a tumor board involved? What are your Docs telling you? Amy in the Ozarks

Yes I do have a tumor board. They all say they would have the dissection but the surgeon who always made me feel like we would just do it is the one who feels like we probably won't find anything. Due to his experience with taking things out with these results. None of my doctors are telling me not to do the neck dissection and they all feel like it is very likely that it is inflammation, but there is no way to know unless we take it out and there is no reason to do another surgery in the area without going ahead with the dissection because of the number of times that area has already been traumatized. It's like the surgeon told me if it's cancer we did good if it's not I have another surgery and recovery to deal with. Like I said the logic is do it and deal with the rest but it's just not that easy for me? I wanted to tell you after I read your reply to another member how much I appreciate and respect your knowledge and your ability to put it in words. You have the gift of words. Thanks for your committment to this forum and the help you share with so many. Lee

Tough call Lee but remember that pet scans early in post Tx often show false positives. It could very well be scar tissue.

This is an excellent link to all of the intricacies of PET scans:

http://www.bcm.edu/oto/grand/05_05_05.htm

All of my early mri's had "regions of interest", which turned out to be nothing.

Lee,
Just want to add that, of all the pieces of treatment, the neck dissection was the easiest for my husband - tonsilectomy, radiation, chemo were all far worse. I realize that your situation is different since you would be having it post radiation/chemo. Still, I know that just hearing about the dissection can be really off-putting, to say the least (my husband passed out in the surgeon's office while being told about it).

Best to you,
Anita

Lee,

As Gary said usually early scans produce areas which "can not be excluded". My first 3 scans had those areas and it bothered me no end but my docs said they were probably just inflamation and they repeated the scans every 2 to 3 months for comparison. My last scan was finally "all clear" so I'm happy until my next scan.

See if they think rescaning in a few months is prudent.

Lee, this is a hard decision, but if it was me I would go for the neck dissection. Peace of Mind plays a big part in my decisions. When I had cervical cancer they told me they would remove everything. Now that was hard to take. (no more children for sure)I went for a second opinion...and knew if I did not have it..it may be game over in 10 to 15 years. Had it and never looked back. It was a real nightmare for me..but I got through it. Hope it helps..I can only imagine what you are going through. Carol Ann.
ps. The sad thing is..the scans, the doctors who really knows.

Thanks so much to everyone. I still haven't been able to make the decision but I am not as frustrated about it. I'm just being patient and will contact my docs on Tuesday after they have went over this again at the tumor board. I don't know why but my gut says no and to wait for another scan. Of course my wife says do it. She seems to understand my feelings though and that helps alot. Again thanks everyone. Thanks for the link Gary I'm going to check it out now. I'll let you know if anything changes.