OK, so I had partial glossectomy surgery and total neck dissection in March, 6 weeks of radiation therapy, my speech is all screwed up, and my doc says my Pet scan shows a "hot spot" in my mouth. He wants to see me and said, we might have to biopsy. If I could spit, I would, because I am so mad and angry and upset! I did not go through all of this hard work and treatment to hear that I have a "hot spot." My mom says I should not jump to conclusions, but what could this possibly be? Any silver linings or other explanations would be totally appreciated right now. Since it has only been 11 weeks since my last radiation treatment, could that have a bearing on a pet scan? Could scar tissue or something similar make a difference? I'm scared, but mostly mad. Help!

Barb

It "ain't cancer until they say it's cancer"....Jim had a lot of "hot spots" right after radiation, but just reach in deep and hang in there, Barb!

Paula

Oh, Paula, thank you so much for your response. I've been waiting all night for something positive to read. I went to the posting, Don't you hate it when....." and got some comic relief, so I'm starting to cheer up.

I'm reading into this that "hot spots" could mean "O.K." or "normal." What was Jim's dr's follow up to his "hot spots?" and were they on his Pet/CT?

Barb

Hey Barb, some of the folks that have been around much longer will be on to give you more facts but we were told by the MO that PET Scans can have "hot spots" for a variety of reasons. And that after radiation there is a high rate of false positives. I think it is prudent for your doctor to follow up but keep in mind, it can certainly be something besides cancer.
Hold on to that sense of humor...

Susan,
Bless you for this post. I was hoping that this might be the case, but did not have the opportunity to ask all of the right questions when my surgeon called me today. I was so ready for him to say that all was clear and good, so the shock made me lose my mind. 10 minutes later, after the shock wore off, all these questions flooded my brain.

On a good note, my life has been blissful. After several interviews, I finally landed a teaching job in the most wonderful school. I was worried that with my speech issues, that I would never teach again. I have been on cloud nine for the past few weeks, then this bad news.

Although I sobbed for 15 minutes on the phone to my mom in the King Soopers parking lot, I got up, dusted myself off and started singing, "Don't worry, 'bout a thing, cuz every little thing's gonna be alright." (Bob Marley) and I felt o.k. again. It's the fear of the unknown that still has me bothered, I guess.

Anyway, I feel better after having read your post. Thank you again.

Barb

If you look back through the many years of threads we have had more people than I can count have their docs get them PET scanned too soon after treatment, and have hot spots as a result. Your body is still healing, that means there are cells in that area that are burning sugars (what a pet scan finds) like crazy. I would bet anything that this is just too close to your treatment to be a scan of any value.

Thank you, Brian!
I tried to find something in past threads to confirm this, but didn't have much time last night. Your confirmation is very comforting. The posts from Susan and Paula were quite instrumental in allowing me to fall asleep last night as well. I am genuinely appreciative for the feedback and will take it easy until I get a clear scan. I love this site. You people are so wonderful!

Gratefully yours,
Barb

Yep, Hot spots show with Pet Scans and it does scare you until you learn it was just a false positive. I think a lot of us have had those occur. I almost had one surgery canceled for a false reading and had to see a couple of more Drs before they operated.

I have had many PET scans. Like Brian said about the scan tracking radioactive glucose utilization, while you are healing there is a lot of that in the radiated areas. My doc and I have looked at these images over the years and we almost laugh now. The heart and tongue are nearly pure muscle that even in their calmest state still have very disparate sugar utilization compared to "normal" tissue like a leg muscle for example. Relax as much as possible as often as possible. Take care.

Thanks EZ and Airkitty!
I feel so much better today after a good night's sleep and all of your experiential words of wisdom. I am scheduled to see the doc on September 13th and we will look at the scans and inside my mouth to investigate further. How soon should I ask for another scan? I think I saw a thread about annual scans, but maybe 6 months would not be a bad idea for my next one. I am anxious to get the "clear" one everyone rejoices about.

So, my surgeon did a biopsy yesterday. They were little core samples. I told him they looked like maggots and made him laugh so I wouldn't cry. He said something about going in with a laser called mose (moze?) to take out any more cancer if the biopsy is positive. He also said he would like to do an O.R. biopsy if this one is negative. Anyone ever have either or both of these?

Thanks,
Barb