I have a lot of trouble letting things go. . . The recent Pet scan report from the doctors says no significant uptake but I want to know what numbers they associate with the word significant. Unfortunately our doctors have issues with the honesty thing, don't even want to expound on that. In June I asked if there was any uptake after completing treatment and told no by more than 1 doctor, NO. Later I get hold of the report and it is 4.6. (I understand about inflammation but for my piece of mind I want to know in writing that this number went down. I tried looking at the CD but could not figure anything out. Does anyone have a clue what to look for as far as a number for uptake. Thanks for any input.

If you have a copy, but an untrained person will not be able to interpret it, and is not worth trying since everything will look like a christas tree, and make you worry even more. Many areas show physio uptake that is normal since PET is highly sensitive, plus they may overlay the PET, CT to compare, plus many others I don't even know, understand. I know, I look at them (9) each time.

Terri, I am sure that if there was anything amiss they certainly would have told you . Please stop worrying. Maybe you could go in to your GP and sit down with him and talk it over.
Truly if there was anything to worry about you would definitely know by now. It's been how many months since the scan?
Tammy

Terri:

Yes, an experienced radiologist and many ENTs can . We discussed these very issues in PM so you know that my opinion is that "have lots of trouble letting things go" is lot closer to delusional than stubborness. I doubt that any OCF member could view the CD and be any better. The damage done by radiation in oral cancer so resembbes cancer in Petscans (or as Paul puts it: my PSSS (petscan scary stories - so ironic in that his signatgure line shows consistently false Petscans showing NED and the next month . suddenly there is cancer)
Sorry for not being sorry about being somewhat brutally honest hear but I will play the emergency admission to the hospital and radiation induced COPA card .
Seriously, a reasonable approach is to ask around for an experience radiologist or ENT for a "second opinion". Trust me, any good doctor who can do this may very well pass on it if you use the language in this post As the 1939 British Ministry of Information never issued WWII poster for the potential catastrophe of Hitler and the Naxis occupying England went: Keep Calm and Carry On : so just ask politely - you need no reason nor express anything but a second opinion.
Finally, all of the above is my opinon , based upon my inate sense that I'm right and they aren;t. so we are very much alike in temperant, just different in accuracy

Glad you're feeling better, Charm. For everyone's information, I had a contrast MRI that did not pick up cancer, but the PET/CT did, which is not in my signature due to the limits. I read a CT, MRI has more issues with scar tissue than a PET/CT, not that it's my choice, and maybe Charm's PSSS is correct. Each is good for different features, and sometimes several scanning methods are used to diagnosis or obtain different features. The PET is good for metastases and nodal involvement, which is an area of my concern. Cancer can also speed up from chemo and radiation treatment, surgery in a short time from cancer repopulation, that is otherwise undetectable earlier being 1cm is difficult to detect by any scan, except a sonogram. That happened to me with a tumor in less than a month, and one popped up overnight before my surgery, and told my ENT at the pre-op, which he decided to remove, and was cancer. I guess I'm lucky too, and found all my lymph node and neck cancer's myself 6 times, except for the tonsil, neck muscle.

I agree with Charm about a 2nd opinion. Be well Charm, and glad to see you bark in the mix.

Paul

Once again I find myself wondering if you are just another sly old dog: posting that I am "bark" in the mix. Simple typo? or clever acknowledgment of the efficacy of my junkyard dog style.
My most recent series of threads in the recurrence section should establish quite clearly that MRIs are also very problematic in distinguishing scar tissue from recurrent cancer. Now you just need to come up with some acronym for miserable MRI similar to PSSS. As you will see in the next post here to Terrib, I think its very important for OCF members to realize the very serious limitations of scans that the manufacturers and hospital marketers either downplay or deny despite more and more studies showing otherwise. It has sadly come to the point that even a grizzled skeptic like myself has to give in and get both an MRI and a Petscan in April, days apart so taken together they just might be accurate.
Charm

Terri

Got your PM reply. I can see why you do not want all the details you have shared before plus all the new information last night on the public forum, and I will honor that. But as I mentioned before, I rarely reply more than once to PMs since so many OCF posters only "lurk" and I want my advice and comments available to all. Plus I'm still far too snared in the sin of Pride to give PM advice only to see the same questions on the public forum seeking a different answer.
My true concern remains that you have a misplaced trust and faith in fatally flawed technology. Which would not be a problem if wasn't causing you unnecessary anguish, pain and affecting serious life decisions for you and Jeff.
I know from personal and very distressing experience about what happens when your voice is essential to doing a job and you develop a speech impediment so serious you have to retire in good conscience. I know the agony of having your entire retirement plans ruined just before they came to fruition.
Actually the decisions facing you and Jeff are even worse that what I and Bev have had to face, with the happy exception that no one is writing his obituary prematurely as the radiologist community seems to be hell bent with me.
You will understand when I say that I believe God shares my opinion of these tests which is why Gideon's approach in Judges is not the way here. Certainly PaulB's experience is moving testimony on the limits of scans.
I wish I did have the answers you seek.
Charm

Lol. I'll leave you wondering, bark or back. I think there is a PET/MRI or one in development. I don't feel confident with my upcoming scan, and figure there will be suspicions, due to the scar tissue from surgery and treatments. I wonder what they will do then? Probably an MRI. Be well.

Well Guys, I just want to add my 2 cents worth.
When Kris finished all his surgery/reconstructions I did ask when they would next be scanning him. Both surgeons looked askance at me and said "what for"?
They then explained that any scans would be impossible to interpret with any sort of accuracy due to the complete change in structures in Kris's completely newly reconstructed neck. Barely anything in his neck is in original form.
I was and continue to be, quite happy with that. Especially in light of all the false positives many people continue to post here and on various other sites.
I continue to do my own "surveillance" of Kris's neck a couple of times a week - surrepticiously of course. He has no pain, old or new. And there is no bleeding.
I have also seen many post that they have a NED scan only to see them post with a reocurrence the next month!
So, I remain firmly in the "what's the point" and "why bother" group. ( probably all by myself)
By the way, Kris is coming up to 12 months post surgery and had
an "all's well" checkup this week.
Tammy

Glad your husband is still clear.