Hi,
I had my PET scan done Friday three months post treatment. My RO called and said it lite up at the right tonsil fossa but he didn't think that was anything. I have an appointment with him tomorrow to discuss.

I read my PET today and it said that I had a probable recurrance tumor on the base of my tongue at the hyoglessus muscle - SUV > 6. The CT did not show any density in that area but did show striking enhancement of the submandibular glands (which are close by).

Have others had a PET that read this way and turned out to be nothing? I was very surprised when I read my report - the report also said that it was a corrected report.

Thanks,
Angie

Hi Angie! I have had a false positive PET scan. It is very common to get a false positive result on your first PET after finishing treatments. Irritations, swelling, infections all will make it light up. Best to talk with your physician tomorrow to see if they will be doing further testing. I would ask about why it is a corrected report. Also ask about your pre-treatment scans compared to this one.

I hope you do not have a recurrence. But, if it is you have been thru the worst already and this time around you are more knowledgeable. If nothing else, you know the terminology and what to expect with appointments.

Best wishes, please keep us posted.

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

Angie,
I too have had a false positive PET Scan. Just see what your RO has to say about it. Good Luck!

Angie,
I just got back from my regular check-up, more than a year after my surgery, and my CT showed a "intensely enhancing submandibular gland, probably related to radiation therapy".
My doc thought so too. A quick google search showed that enhancement of salivary glands is related to post radiation.
My ENT and staff are very careful, but did not make a big deal about any of it, so I feel sure that this is what it is. I got an all clear from them. So yours could easily be the same.
They don't do PET scans routinely.
Best to you,
Anne

Thanks Christine,
I was a little freaked out. Initially, after my surgical lymph node biopsy (couldn't punture the lymph with needle biopsy), the surgeon told my famly it was just a reactive node. Then I got the report metastatic cancer - shocked.

So when I talked with my RO on Friday, he said everything looked fine just something in the right tonsil fossa we need to watch. Then today I got the report that didn't mention the tonsil fossa but said likely recurrance base of tongue - again shocked.

My ENT called me tonight and reassured me. His reassurance along with the response from the blog made me calmer.
Angie

Thanks All,
I am calmer and will see what my RO says tomorrow. My ENT called and was reassuring. He felt that it was a red herring.
Angie

Hoping very much it a pet with attitude - good luck! And try not to worry too much!

I'm sorry for your scare, Angie. I'm glad to hear that you feel better with reassurance from your docs. Good luck and keep us posted!
xo,
Kerri

Saw RO today. It was a great visit. He pulled up my CT, PET, previous PET & reviewed it all with me. He did a very extensive exam. After having his hands down my throat feeling around and having me do all kind of tongue movements, he looked with the scope.

He explained that on this PET he was looking for any more lymph node involvement. While we needed to take the area that lite up seriously, he thought it was okay (it was not base of tongue - the radiologist put base of tongue in one area and hyogusses muscle in another). The area also got 50 gy of radiation incidentally.

I will have another scan done on March 8th. I'm feeling pretty good now after the surprise report. I would have felt great if the scan had been clean.

Thanks,
Angie

I know the horror believe me. Despite feeling great there is always that question in the back of your mind and remember PETs are notorious for lighting up like this particularly at the 3 month mark!... Hugs... try not to worry!

What Cheryld said goes for me. I'm so glad it was just another PET false positive. I don't understand why there isn't a standard warning required to spell out in the radiologist report that PETscans for oral cancer patient have an insanely high rate of false positives that scare us to death and worry us so.
charm

Angie, excellent news! Im so glad your doc followed up and did a very thorough exam including using the scope. Now you can relax. Glad you are feeling calmer and more confident that this was a case of another false positive PET. Those darn things can scare a person to death! Best wishes with your upcoming test.

Make sure you follow the these directions for the next test. Rest for at least 24 hours preceding the test and drink lots of water (minimum of 48oz), avoid carbs and sugar. This will help you to get a more accurate PET.

Thanks Christine,
Didn't know to avoid sugar and carbs. I'll be really careful with the next scan.
Angie

Your welcome! I read this advice here a long time ago when I had my false positive. The next scan I listened and it was all clear. Best wishes!

Eating high protein 2-3 days before, along with the low carbs and sugar, helps too. That's what they had me do 6 years ago. We have our post PET in March. Mid month because that's when Kevin is home from work. Not looking forward to it. I think I would rather have them do an MRI first. That's what they did the first time. HATE this! I know we all do.