Hey Y'all,
I haven't been on the Forum in quite some time. I recently went in for my 5 year scans. Unfortunately, I got a Positive PET for Base of the tongue. I don't think I have any symptoms for recurrence but I realize that due to the location it would be hard to notice. Also, it was only two weeks ago that I met with the ENT and she didn't see anything to be concerned about. Because of the Positive PET I'm going back in to see the ENT Doc on Tuesday. This has me pretty concerned. Has anyone here had an experience with a False Positive Pet Scan in the base of the tongue?

-Kurt

Kurt

For what it is worth, I have had two false positive PETscans that purported to show a recurrence of base of tongue cancer. My RO and the tumor board dismissed them after follow up MRIs.
what was worse in my opinion was the false negative Petscan that showed no cancer right before my cancer had come back.

The literature and studies show that for base of tongue cancer, the false positive rate is about 50% with some ancedotal reports of up to 90%. Again, these figures are just for base of tongue cancer. Petscans are extremely accurate for lymph nodes and help many patients avoid unnecessary neck dissections.

For the last three years, my entire CCC team and the tumor board and my ENT all recommended MRI/CT only so I don't have to go thru what you are going through right now.
Hope it is also a false alarm
Charm

Charm

That is good information that I did not have. I thank you for your quick reply. I very much hope that all this is a false alarm. But of course it is stressing me out for the time being until I know for sure. I'll post on here what happens next after I meet the Doc. on Tues. I hope your are currently doing well. Thanks again for the information as I was freaking some. I think the best thing for me to do is just focus on living for today and not allow this to consume all my time since I don't have all the information anyhow.

-Kurt

Hi there... something else that may help... BOT cancer is generally not the same as oral tongue cancer - usually BOT cancer is HPV related. Oral tongue (the smoker and drinkers cancer) occasionally has no known cause (like mine and yours) Frankly I attribute mine to chronic irritation but there's nothing to support this. So hopefully this supports the false positive. I am sure that at some point the cancer can move anywhere... so it's not 100% but usually. Good luck... take care

Hi Kurt,
My husband just went through a false positive on his first follow up PET. They followed it with an MRI and it was deemed inflammation. Scared the crud out of us as we were just getting to some sort of normalcy.
Was your initial diagnosis HPV related? It doesn't say that it was...but doesn't say it wasn't either. Ours was.
I would tell you to try to stay calm, but that is like telling the wind not to blow. We were a wreck all weekend until the MRI on Monday. The gal in charge of which xrays got read first snuck ours to the front so we had our results in about 3 hours!! Try to keep super busy over the weekend, that's the only thing that kept us going.
Please stay in touch with us and let us know.
Blessings,
Kathy

Hey Folks,

I didn't know about HPV being specifically related to BOT cancer. As far as I know mine wasn't related to the HPV virus. I do have a strand of the HPV in the form of plantar warts on the feet that come & go with a small one popping up and then disappearing from time to time. However, I do not have the specific strand that is correlated with oral cancer or at least that was what I was told 5 years ago. I appreciate everyone's kind words and blessings. I'm doing my best to enjoy the weekend but am struggling some. It's my wife's 30'th b'day so we're going to do some fun stuff today that will hopefully let my mind wander to greener pastures. I'll definitely keep y'all updated on what transpires next week. Thanks for your replies.

-Kurt