To PET or not to PET? That is the ?

I pressed add reply before I could get my real response. I am sorry that there is confusion for you. Take a deep breath and follow through. My father has never been offered a PET. When I brought it up they sort of scoffed stating the invalidity and that CT's are sufficient. My dad had a head, neck and whole torso CT-isn't that suffiecient considering that the body at certain times has different levels of metabolism? It is hard-so hard--does it come down to the actual scan or the human interpreting it? I don't know. Darrell, I am so sorry that there is uneasiness. It is just shocking how different treatments are everywhere you go.

There is quite a bit of recent literature comparing PET scans (alone) to PET/CT scans etc. which seems to show a significant improvement in detection from the newer technology. However, who reads the scan is also important, how many HNC scans have they seen? Someone who sees a lot of these is probably going to have more ability to pick out a cancer signal from healing or inflammation.

There is also a rather strict protocol to be followed before the test. Fasting for 4-12 hours (seems to depend on area to be scanned, Barry was told to fast for at least 5 hours), to avoid foods containing sugar or simple carbs from the day before, no caffeine, only water . The goal of this is to reduce available blood sugar so that the cells compete for the labelled glucose. Blood sugar is tested before the label is given, and needs to be in a certain range. Also, strict inactvity in a dim room for 45 minutes before the test (no reading, talking etc.) so that the muscles do not also compete for the label. Barry had a head/neck scan and then, a whole-body scan (arms in different positions).

The surgeon we consult with (not our ENT) emphasized that he had reasonable confidence in a properly admistered PET/CT combined scan, read by someone who knew what they were doing. He would not want to decide on whether to do post-treatment surgery or not based just on a PET scan. He has had experience with (PET) false positives, when he did surgery and no cancer was found. Thus now he would want to re-scan in a month or perhaps add an MRI if there were suspicious areas. He emphasized that PET/CT was just one tool that is used to determine status, although an important one.

Gail

My Head & Neck surgeon NEVER orders scans (it's just not their thing - it'a the MO's and RO's that order the scans)- prefering to palpate my neck instead and look with mirrors and tongue depressors.

I have had an ongoing debate with my oncologist over this and since I am more concerned about distant mets at this point. Local MRI's and grainy chest x-rays aren't cutting it for me. I want to know what's happening in the liver, kidneys, lungs and brain. At this point, with a 5% recurrence risk at the original tumor site, I ALMOST consider these followups a waste of time (at 3 years out) -although I have no intention of foregoing them.

I firmly believe in the PET/CT and I have read as high as 98% accuracy. Of course this does require a somewhat skilled reading radiologist and not some technologist fresh out of Western Career College. Back to the mantra - go to a CCC! As Gail said, it is merely one small component in the entire diagnostic workup anyway.

Daryl, it is true that PET's alone are not as accurate (especially with no points of reference afforded by the CT part of it), do result in more false positives, and will require a CT ot MRI (spiral CT for the lungs is the gold standard). Too soon to freak out.

The impression I get from my HMO is that "hey we cured" you and anything after that - you're on your own. Oh we'll do do diligence in the original tumor site, that we got that right (probably so you -or God forbid, your estate)won't sue us but if there is a distant metastesis from it - oh well. It's all about money... They make more money on Viagra and Minoxodil anyway...

PS I failed all of my early MRI's and I'm fine now (at least today anyway)

Darrell,

I agree with Gary. Our ENT and radiation oncologist are strongly opposed to scans. However, the medical oncologist ordered one in November.

We were told by a very young doctor, about 25, following the CT scan during a hospital overnight stay that the scan showed a residual tumor mass on the tongue which was the primary site.

Then that same day, another doctor came to the hospital room and said that the CT scan showed a tumor in the neck.

Needless to say we were extremely worried for 3 or 4 days until we were able to see the ENT would did a visual exam of the tongue and palpation of the neck and said there was no tumor.

Subsequently we went to see the radiation oncologist who was quite upset that this scan was done because he said that they are the one who are left to explain the result to the patients.

He had the scan report in his office and he also let me read it. The report did mention something about a tumor in the neck area. The RO said it was rubbish.

The RO assured us that there was no tumor as he had looked at the scan films himself. The RO also went on to say that a lot of stuff is put in scan reports to protect the provider from possible future litigation.

High technology methods do not a complete diagnosis make. In our hunt for more and better I think we get caught up in the high technology and somehow favor it over other diagnostic tools. Fancier machinery will never replace good old physician instinct/sense. Its wonderful to be able to look inside the living body and take pictures, but there is still an awful lot that is unknown in there - no matter how good the pictures are.

I want docs from different disciplines to reach the same conclusion about images of my insides. There is way too much at stake - for me and for them. With all the lawyers that are out loose in the country, everyone needs to cover their tail. Malpractice is still a major practice expense for most of our docs. With corporate insurance interests, and liability insurance intests at stake, it can be tough to know who to listen to. While always looking for progress, I will stay with the docs that helped pull me through the first time. Tom

The PET scan shows the OTHER areas of concern. You know, the areas you don't know about yet. Take a step back and read some of these posts. How can everyone sit here and knock such a valuable diagnostic tool? I stand by my statement that false negatives are rare and, therfore, a PET is a good thing. Maybe those of you that have had a bad experience should look no further than the technition or radiologist. MSKCC, MDA, and JH all use them. Why is that? FYI, my H and N surgeon does not ask for the scans either, my MO and RO do. The H and N surgeon relies on physical examination, palpitation and COMPARISON CT scans for follow-up. When my PET revealed lung mets, I went to a Thoracic surgeon, not my H and N guy.

technician

I thought I would add a little here to voice a perspective that few will agree with 100%. I don't believe that any technology like PET, which is designed to look for things that have high metabolic activity at a cellular level is a valuable tool by itself. (High metabolic activity means many things most of which are not cancer, and the resulting false positives are a fact of life.) We also know that PET's are really good at showing the bodies high metabolic rate when it comes to healing an area after radiation, surgery etc. which panics plenty of inexperienced doctors, and too many patients. I also don't believe that CT or MRI's are the gift of accuracy, since they can't see things as rule less than 2 mm, or if the slice/view view misses that area they are in, (some take views at 5mm) they will miss it. I also don't believe that any doctor's fingers palpating my neck or his trained eyes looking in my mouth are any guarantee that he will see something that is wrong or feel something out of whack

I just want to add one point to my post. I have only had 2 PET scans, one at about 17 months, that one found the lung mets. The second was about 8 months later, before my second, and larger lung surgery. They were checking to make sure it was not a wasted and very invasive surgery. I am not a proponent of overly frequent scans.

So Brian, how DO you feel about PET scans?

Glenn