PET Results

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PET Results

by caw88 on Sat Apr 27, 2013 02:16 AM

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My husband has been in remission from stage 4 NPC for 4 years. He has been quite ill this winter and has had severe pain in mouth and sinus for a few weeks. We thought it was thrush or a sinus infection, but ENT did not find any infection. He had not had a PET for 2 1/2 years, so they did a PET today. Doctor called the same night and told us that the SUV was 4.8 and in the area of the original tumor. He said it is a "low" number and if there was not a history, they would not be concerned. He is concerned enough to get a second opinion on the reading of the PET by a radiologist who specializes in Head and Neck cancers. 

I know the doctor does not want us to panic yet, but I am. We had results from the PET in 6 hours, and they want a second opinion!

Anyone have experience with PET uptake numbers and recurrance?

Thank you

caw

RE: PET Results

by mark5004 on Sat Apr 27, 2013 03:26 PM

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I suspect this is just healing activity from pollen irritation.

I never identified "uptake values" on any of my PET exams. I usually see the words "minor uptake over background" or "insignificant uptake".  Frankly all of these words just strike fear in us, and more often than not, result in another round of tests, worrying and then nothing.

Do not live in fear.  God bless you!

Mark

RE: PET Results

by Sdurnell on Sun Apr 28, 2013 03:50 AM

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Caw,

My RO always goes over the PET scans with me right after they are done, so often before the radiologist has read them.  Whatever shows up, and something always does, he can explain to me as we look at it.  (This is from your throat dilation; oh look, you've got a bit of arthritis in your shoulder; whatever.)  That makes me think that a 6-hour turnaround is not that uncommon.  Take deep, cleansing breaths and fix on the part of the conversation where he said that there is only a concern because of his history.  On anyone else this would be classified as nothing.

Best of luck to you and your husband.

Susan

RE: PET Results

by ErthWlkr on Mon Apr 29, 2013 04:35 PM

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The fact he wants a second opinion says to me you have a doctor who cares and is curious. I'll agree with Susan - because of the history, extra care and caution is being used.

Only thing I would add, is that when I had a particularly sketchy PET scan when I was in my second year, my oncologist ordered an immediate MRI to have a different look at the suspect area. It was a week's worth of anxiety but turned out to be nothing of consequence.

I would also recommend to you that you get and keep copies of all reports - scans, blood chemistries, etc. It's a good idea to keep a history in case you, or another doctor, needs to refer back to it. Sometimes the report can cause a bit of anxiety when you read it - but doesn't hurt to ask questions either.

Wait for results - although you can also choose to speculate on positive outcomes as well as negative ones. :)

- Jeff

RE: PET Results

by Oudave83 on Wed May 01, 2013 01:07 AM

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I agree with mark..hang tuff..think confidently..pet scans have a million false positives...oudave83 5 years out may 8 2013. Head and Mack stage 4 left side....that is why I stopped pets after year 3.....

RE: PET Results

by Oudave83 on Wed May 01, 2013 01:09 AM

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Be bot afraid....as mark mentioned and our lord and savior mentioned repeatedly....much easier to say then to do...almost 5 years and I fight those fears monthly weekly and sometimes daily.......but u come out of it ok and a bit stronger each time. Oudave83

RE: PET Results

by kennyr on Sun May 19, 2013 10:13 PM

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hi have not talk in a while iam doing good going to my 5 year dinner at the ctca in june.i get my leaf on the tree of hope it is good to hear that ylou are doing good.

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