I have been remiss in posting of late. Now I seek advice. Pet scan lit up in neck area and chest area. My VA ENTs call this inconclusive and have ordered an anatomical CT scan of the neck and chest. What's your opinion on this.

Darrell, the PET scan has a high rate of false indication (positive). There have been many such scans that later proved to be nothing serious. Try to set it aside until the other tests are done.

Just went thru this with PET/CT that lit up in lung. After much reveiw and a new CT it was clean so the conclusion was false positive on the PET. So follow the process as quick as possible and hopfully it is false positive.After going thru this I am not sure how I feel about PET/CT in this process!Good luck.

Darrell, PET scan only finds high rates of metabolic activity. Its use is to direct the medicos to look more closely at a particular site in the body. Wait till you get a more focused look at those places before you get anxious. Any test, short of physical tissue biopsy, does NOT identify cancer with any certainty. The scans just allow them to look in more focused areas. Let us know what you learn. Be strong. Tom

I question the validity and need for Pet scans. I have been away from this forum for sometime and had forgotten how much I need this.
Darrell

We spoke at length to the radiologist who was going to read Barry's PET/CT scan (which was done Thursday). He first talked about how the fused PET/CT scans were an improvement over PET alone (or PET followed by a later, independent, CT or MRI). However, he admitted that there was still a certain small percent of false positives, and also, of ambiguous scans. He himself has read 100s of HNC scans, and says there are still times when he is not sure if the "hot" area is due to inflammation, healing or residual cancer. In most cases he can tell (based on experience), but not all. If the "hot" area can be biopsied (say, base of tongue) that would be done. If not, the scan repeated after a certain period and reviewed for changes.

They have enough confidence at Hopkins in this procedure that most patients who have gone through chemoradiation, like my husband, decline post-treatment surgery. (Although some of the surgeons would still like to do it !). I know Barry would not have been very confident in this decision without a PET/CT scan.

Gail

Darrell, I'll go one further and tell you that my ENT refuses to order a PET scan for me. This has been a source of conflict for me for two years now. The last time I asked, he had just completed a seminar where the weakness of PET type scans were discussed.

I am on one hand dissapointed that I am not getting the "Best" follow-up, and on the other hand I am happy that I am not forced to worry about a false (or inconclusive) reading. (which you know is no fun)

I wish you well.

Darrell,

My Florida ENT wanted me to have a PET scan, the original ENT does not. (I was scared to death to have the PET due to reports here of false positives.) He has me do the CT with/without contrast and a chest xray so he is comparing the same test every year. I guess if something showed on the CT he would test further.

I am sorry you are having to worry about this right now, and my thoughts are with you.

Sincerely,
Lisa

A properly administered and interpreted PET scan is an extremely valuable diagnostic tool. I'm going to go out on a limb here, but I imagine the scans are good, just read wrong. All scans are not going to be perfect, but if the PET scan causes you doctor to take a closer look, where is the problem? Not wanting a scan for fear of a false positive seems a little short sighted, on the part of the patient and the doctor. The big plus on the PET is it's ability to locate distant metastases, not diagnosing a reoccurrence in the original surgical site. With all the worry on here about having a reoccurrence you would think all tests would be welcome. A false negative on a PET is almost unheard of. Darrell, was there a high uptake to the lung area? Were they cocentrated spots? Were you a smoker, and if so, is that why they doubt the test results?

I'm wondering if a false negative on a PET really is that rare. My husband had a PET scan before surgery and the PET failed to pick up the 1.7 centimeter tumor in his tonsil and it also didn't pick up a lymph node with metastatic disease.

Anita

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

I think this PET scan issue is a good example of "WHO does it is as important as WHAT is done," a mantra often voiced by Don Cooley who runs a major web site for prostate cancer. The major CCCs all use PET/CT, but they also have experts to read them -- the doctor who read Barry's specializes in HNC and brain cancer, and has probably seen 1000s of these scans. This is lot different from going to a local imaging center and getting someone who sees a few HNC scans a year to make a diagnosis.

Also, it is only one of the several tools that should be used in conjunction, as several have said -- Barry has had physical (i.e. endoscopic and hand's-on) exams in addition to the scans and they would have done biopsy and/or MRI if there had been suspicious areas.

Barry is in a tumor-marker study at Hopkins from which he personally will not benefit (as it's double-blind) but the goal is to follow a cohort of patients from dx through treatment and for 3 years, taking blood at regular intervals and following a suite of possible tumor markers to see which, if any, correspond to the behavior of the cancer. Especially if it does not respond to treatment or if it recurs.

Maybe in a decade or so, these and other studies will provide a better means of early diagnosis and post-treatment monitoring.

Gail

Speaking only from a patient perspective, I get comfort from the scans as a backup. Quite often, especially during treatment, I felt like there wasn't much to do except "go along" with tests and treatment. After a year of going through the absolute worse year of my life, the wonderful advice from this forum pulled me through it. At the very least, going to a CCC was reassuringly the best option.

I have a feeling that the fused CT/PET scans are going to be the wave of the future for most of us. For the past two months my doctors were telling me of the "new toy" they were bringing in and I had the experience of jumping in the tube last month. My ENT doc told me today that this machine is so valued that they are building a SPECIAL whole new building for it (This explains why I had to jump into the back of a semi trailer for my first experience) It was a definite improvement over having to go to two different radiation areas and spending half a day getting both a CT and a PET scan. It also seemed to be of shorter duration.

However, it was certainly of great relief for me to find that during the ENT appointment today, he read the findings of that new fangled CT/PET scan to tell me that from head to toe--nothing was "lit up" and that includes the lung and liver, two of the areas they are always concerned about.

Personally, if given the option, I won't ever object to getting scanned on a regular basis. It definitely gives me a feeling of security. I'll bet dollars to donuts that in the future most of us will be scanned with the new fangled combo CT/PET scans. Given the way my doctors have been crowing about this machine, it's the future...

Jen

Jen,
I know that wonderful feeling when the scan comes back with 'nothing lit up'. I requested a PET scan before my last surgery. I didn't want to go through with that unless I knew the cancer wasn't rampant throughout my body. Insurance didn't want to pay, but finally a letter of medical necessity did the trick.

I am also going to request a CT/PET next year to get my lung doctor 'off my back'. My CT's keep showing 'stuff' that is moving around in my lungs and doesn't look like cancer. So he keeps ordering another CT. This year, I have had 4 CTs of the lung, one of the abdomen (pancreas), a barium swallow, a bronchoscopy and an endoscopy, the later because of spot on pancreas(been there since 2003, unchanged) that showed on a lung CT. All of this and I have no symptoms of anything. He just wants to keep checking, but he still hasn't called me back on the infection found on bronchospy done in October.

They keep telling me all this radiation from the tests is nothing. I say no more than 1 a year from now on and less if possible. My surgeon does not think the spot on the pancreas should even be bothered with and since I have had no lung problems since May of 2004, we can ignore that incident also. I agree but this other doctor really gets nasty when you counter his opinion. For now, I'm taking control.

Eileen