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#147595 03-30-2012 08:51 AM
Joined: Jul 2007
Posts: 13
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Joined: Jul 2007
Posts: 13
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
25 yr old. Dx 11 July 07 originated in tongue Stage IV. 3 surgeries had clear margins Had a hemiglossectomy 13 Aug and radical neck disection - Left side. chemo/rad Started 24 Sep 07 Finished 7 November 07-Never Smoked Drank on special Occasions
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Kurt

You must be really worried to post twice. So I will answer twice
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


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13

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