Hello everyone! I got a call from my ENT today. He had forwarded my cat scan to my surgeon at Virginia Mason in Seattle so he could review & bring before tumor board. They want pet scan done for a base line for future comparisons if needed & just to be sure everything is clear like they suspect. As I understand it, pet scans give a lot of false postives. Does that mean a negative would be really good? I'm concerned that if we get false negatives, then here we go with biopsies & all the garbage that goes with it; freak out, worry, despair, healing from the biopsy, etc., etc. I've just had about enough of this freakin disease!!! Can somebody just make it all go away?

I added this to a post in another section on this topic.

For those of you who are medical term impaired or confused:

A "positive" result in a biopsy (or any other medical test or scan result) means that you have tested positive (or have a highly suspicious area) for whatever they were testing or looking for, e.g. cancer, squamous cell carcinoma, etc.

Conversely a "negative" result means that you don't have what they were testing for.

So a false positive may result in additional and unwarranted testing and procedures. A false negative means the condition they are looking for is missed, when it is in fact, present.

These guys (the radiologists and ENT's) are usually smart enough to discern a false positive from an ROI (region of interest). For instance, they know that scar tissue can light up on a PET. They will typically order an in depth "visualization" of the area (which they are probably already doing.

Consider yourself fortunate that they are doing this - many of us can't get our HMO's to order a PET scan. I went to UCSFCCC and they only followup with annual MRI's and chect X-rays (which is great if I have a recurrence at the original site). A PET will show up distant metastesis before it's untreatable, such as liver or lung nodules. By the way PET/CT's are very accurate, if you can get one of those.

I hate to say it but "freak out, worry and despair" and part of the cancer game. That's why we call it the club that no one wants to join. It gets better though as time goes on.

Erik,

I am sorry to see you going through these difficult times. It seems like about the same time you stop thinking about it, something pops up that churns you through the cycle again. Hopefully it is nothing to worry about and the doctors are just being cautious because they know how mean the beast can be.

I had a PET/CT two months after treatment for a baseline. I have since had one at 6 months and one at a year. There were three ROI's (regions of interests) on the first scan and they were certain it was only scar tissue since they all three were in the most intensely radiated areas, one being the primary tumor site. The second and third scans were compared to the first to determine any differences in area to evaluate growth in the three regions. My ENT and the radiologist and the medical oncologist and the radiation oncologist all read the scans and concur there has been no growth although they will continue to monitor at 6 months for precautionary reasons. They all agree that the PET/CT is by far the most accurate test and even offer the entire scan on CD (for a mere $15) to send to anyone I wish for a second opinion.

I was fortunate because I am allergic to CT contrast so my insurance had no options other than PET and the only PET facility my doctors use only provides PET/CT scans. They cost over $6,000 each. Ironically, the insurance company pays this but won't pay for having some questionable teeth pulled.

False negatives are the least likely result of a PET/CT and false positives are the reason they will do multiples over a span of time to use the first as a baseline for comparative purposes. In the meantime, try to not worry and if you lose sleep, work on just the night before the scans. I wish I could make it all go away for all of us but unfortunately it is now an integral part of our lives. It sucks.

Ed

Gary, I am in no way impaired or confused other than my ability to swallow & speak & maybe proof read! I meant false positive in regards to my concerns.

That wasn't meant to be anything personal - it was my feeble attempt to be funny. But I have to admit sometimes it's difficult for many to figure out what "positive" and "negative" means from a medical perspective since they have opposite meanings from what normal people are used to and are are confused here when discussing it. Then add the word "false" to it and it compounds the confusion issue.

I have to admit that I WAS in fact impaired for a fair amount of time post Tx. My wife told me I had a difficult time comprehending complex issues and also focusing on things so that's ok too. The Tx beats the hell out you! I'm glad you're doing well - you're the exception!

Talk about impaired. During treatment I swore I was doing just fine mentally when a store clerk I know sent me to the store restroom to put my blouse on right side out (grin). My husband wouldn't play Scrabble with me either. And a friend still laughs at how I couldn't open the window I mistook for the door in a restaurant. I do NOT miss those days.

Erik, it will get better. I promise!

Edited to say I do not mean you are confused, Erik, just that the father out you are, the better you will feel and the less you will worry. You are still pretty close, relatively speaking, from end of treatment. Six months and a year from now you will look at things diffently, I am sure.

Doctor speak is perplexing. The way the use the negatives/positives, indicated, remarkable, etc. I wonder how many hours of classes they spend on changing the lexicon to set them apart in all discussions .

Ed

Surprisingly similar to lawyer speak. Plus they make up words and terms. I remember reading an article many years ago in "Radiology Today" about a condition called "Gosepyboma" AKA the "problem of the retained surgical sponge" (OOPS ) Apparently quite often fatal. They are supposed to count them so that none are left behind (they are now required to put radiographic markers on them so they show up in x-rays). They also leave other surgical instruments behind as well. :p

Plus they have sublanguages. Many radiological terms are not found in the medical encyclopedias like Tabers.

It is a art - not a science :rolleyes:

Hi Erik,

Thought I would add my 2 cents on this one. I just saw my surgeon about one week ago for a routine follow up. I had a CT about three weeks prior to that. My radiation oncologist (whom I had seen about two months earlier) wanted me to ask my surgeon about a pet scan, so I did. Here is my surgeon's opinion (for what it's worth). He feels it's the 'new toy' that a lot of people are now using. He said we can certainly do a pet scan (my local CA center has a pet scanner), but he said with all of the false positives, he wouldn't want to put me through that. He further said (and this really resonated with me) that at present there simply is no good long term clinical data to support its use (in his opinion). This is at odds with my radiation oncologist, who strongly implied that it would be a very good idea to consider adding it to my follow up regimen. Who knows?? Best of luck to you.

David

The medical professionals that use PET like them and the ones that don't, give you the false + line. Mine was right on and found cancer in both lungs. This was not picked up by the standard one year x-ray 4 months earlier. I would be much farther along on the road to death without the PET, and I know I am not alone here. If you can find a facility that knows how to read one, and your insurance will pay, get one. I had mine at MSKCC and they seem very confident in their results. The real disappointment for me came, not from finding the cancer but from learning that I did not have one of the often referred to false positives. I would be curious to see how many of us have had a confirmed false reading of a PET scan.

Glenn

Ok you guys have re opened my big BIG complaint from late September. I had a regular visit with my ENT and at the end I asked him to set up a PET scan. In short he said NO.

Now you all have heard me rant about the stupid application of logic in the choices doctors make...This one has me going. I have good insurance (after my wife went back to work at one of the worlds largest insurance companies) so cost is not the problem. The ENT said he had just come back from a "seminar" on the subject and they "just weren't worth the trouble" (because of false positives.) He then reminded me about my 3 year 7 month statistics. I suggested to him that the statistics weren't in my favor when I got this stinking cancer at way too young an age (statistically) and I told him that I could give him several names of OCF members whom are presently fighting PET found recurrences. He was not moved.

I find it humorus that doctors would not go whith a test because "there is no long term clinical data supporting it's use (PET)" when in fact PET units are being installed everywhere! How do they expect to pay for the damn things?!

My personal and wacky belief is that the competing MRI-CT equipment is still not fully paid for so the manufacturers are spreading rumors to give them the edge.

My problem now is to find a way around my ENT without offending him. (He is a great guy otherwise) He is obviously stuck in the larger statistics mode and I am more concerned with my personal small group (of one) survivor mode. Remember in a group of one you cannot have 65% survival! Any suggestions on how I might go about getting a well deserved PET scan would be appreciated.

From what I read on the net about pet scans, they seem to be worthy of use. Pretty much all the sites say the same thing. I do not read anything about false positives. My ENT referred to false positives as being a problem & yet he seems pretty progressive & proactive about making sure it's not cancer. How DOES one sort through all the subjective opinions? How DOES one find out what facility is the most skilled at reading pet scans accurately?

I have an update from my PET scan questions with my RO.

Some background: First off, my RO is the top rated IMRT RO doc in the country according to the Castle top 500 US docs reference book. UCSFCCC is the 7th highest rated CCC. Initially they insisted on a PET scan which my HMO paid for - Any tests UCSF requests are automatically done and paid for by the HMO so I know that money is not an issue.

PET scans are often done initially as part of triage to determine whether you are treatable or not (i.e. distant metastesis issues). In my case it verified the cancer site and indicated no others.

The NCCN guidelines don't call for an annual PET scan as others have mentioned, adding yet another reason why some don't get them.

My RO did tell me that UCSFCCC typically orders an annual MRI for H&N patients so the HMO has set one up for me on Nov. 28th.

Personally I wish they would include an annual PET scan as part of my surveillance protocol but I have yet to be able to talk anybody into it.
There has to be other factors why some get them and some don't. I didn't have an occult tumor or any regional or distant metastesis so I suspect that may be a reason.

By the way, my experience with my H&N surgeon is that he doesn't place much stock in any kind of scans. It's the oncologist or the RO that typically have ordered them. He has always had the last say since ultimately "direct visualization" been been the end result of a questionable scan (of which I have had more than a few of). His opinion is that the visual/palpation exam is the gold standard. He was also trained at UCSFCCC.

As far as the most accurate reading - go to a CCC for starters. In my case the HMO radiologist does one reading then the CCC radiologist and RO do a second. The more sets of trained eyes the better. My research has found the same information as yours - that PET's are very accurate and PET/CT even more so. They are less accurate when scar tissue and the healing process is involved as are other scanning modalities such as MRI's.

Erik- false positive are indeed something discussed often when talking about PET scans. Reports of rates as high as 20%. But it is not the technology that is at fault here, it is the general nature of what a PET finds. If you have read about them on the main body of the web site, you know that they do not find cancer, they find cells where metabolic activity is high.... measured by the above average burning of sugars in the cells. Certainly malignant cells have a higher metabolic activity than normal cells. But many things besides cancer can cause this to take place, and not all those are life-threatening issues. So a positive PET doesn't necessary mean you have a met or recurrence of cancer. As Gary has mentioned here before, the current gold standard for a more definitive read is a PET/CT fusion scan. Things that show up on the PET but not the overlaying CT are unlikely to be cancer. The best of both technologies yields a much better result.

The cancer center I go to is afilliated with MSKCC and they apparently believe strongly in the value of the fused PET/CT, and judging from the double sided foam tape holding some of the bits together I suspect it gets a lot of use. Probably because they are only charging about $1800.00/usd for a scan, including the follow up doc's visits from what I gather on my insurance claim.

Thing is it will show other items, in my case a severly inflammed shoulder and post radiation muscle healing, which in untrained hands could be mistaken for a lot of mets to the shoulder and neck.

I wonder how much of the various doc's reluctance to use PET/CT is based on cost and how the nubmers work via the medical group/HMO cost reduction bonus.

I've got a UK based healthcare insurance provider, and while I have regular coverage worldwide, in US and Canada I've only got emergency medical/evacuation because of the HMO situation. Judging from the comparitive costs I'm seeing, I understand why.

But, I'm digressing and getting on my quality of the healthcare business soapbox.
Bob