Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Angie
PETscans have a lousy track record with me. Two falsely indicated that the cancer had come back on my mouth's right side (no cancer on either side as it turned out) and another one missed it when the cancer did finally come back on the left side of the base of my tongue. Only MRIs have been accurate for me. The SUV levels of normal recovering tissues in the oral cavity mimic those of cancer so PETscans hav a much higher false positive error rate for oral cancer than other types of cancer.
They often "correct' the reports so that isn't necessarily signficant. It's good you can meet with the RO to talk directly about what he sees. But I'd follow up with an ENT surgeon.
Worst case scenario: a recurrence is survivable as Christine and I have demonstrated. But we do not need or want any more new members in our comeback club 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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