Sorry Cheryl,
the topic did fall off the tracks a little bit. The NCCN Oncology Practice Guidelines recommenend a PET/CT as part of the initial diagnostic workup. The RO will typically order one. ENT's, in general, don't rely on scans very much. Because of this your insurance should pay for it since it is part of the "standard of care" for head & neck cancer.

The PET scan I had confirmed the tumor that had been previously biopsied and no other uptake activity so it was a relief of sorts.

@Charm,
I am not say a PET-CT is inappropriate for Cheryl.

I really don't have an opinion, but the NCCN guidelines seem to set "as a minimum" a CT and/or MRI with contrast for "Workup" diagnostics when the initial stage is thought to be I or II.

Beyond stage II they say to consider a PET-CT (instead of a CT or MRI), so they are definitely regarding a PET-CT as a more appropriate scan for "Workups".

The guidelines show options and based on the initial "Workup" and staging of T1-2N0M0, surgery to excise the primary and a ND are shown as an option to RT.

The guidelines then show additional options which may still include RT and/or Chemo-RT based on the surgical margins, or other adverse surgical findings.

I am not familiar with a PET-CT being used for the RT planning. My RT planning scan was done on a different CT and my PET-CT's have all been diagnostic.

We probably need to remember that these guidelines are written for accredited CCC's that have PET-CT capabilities.

The PET or PET/CT is typically used for diagnostic triage. The MRI and/or CT is used for actual treatment planning for RT. They need a 3D image for RT Tx planning.

The NCCN guidelines are the "standard of care" - if you accept any less, then you do so at your peril.

Many institutions have mobile scanners that visit them, to facilitate these types of scans, when the institution doesn't have the gear.

Stage II can be tricky. If a node has been found then it bumps the staging to III. More often, I have been seeing people here who were never informed about their staging "bump" after the ND revealed a positive sentinal node or other lymph involvement.

Other diagnostic tests (that should be part of the initial diagnostic workup - pre Tx) that can fall thru the cracks:

Audiology: (if you are getting Cisplatin a baseline hearing test should be performed prior to Tx) during and after Tx as well. Some people can have a hearing loss from Cisplatin. It is rare and if you detect any abnormal hearing conditions, notify your MO immediately. I had a slight improvement in my hearing - go figure.

Creatinine Clearance: This test clears the kidneys ability to handle Cisplatin. They would be guilty of malpractice if they fogot this one.

TSH: This bloodtest will give you a baseline for comparing your thyroid stimulating hormone levels as you progress through RT and beyond. Many doctors order this test every 6 months - almost for life.

There are lots of other tests but these are the common ones that some people don't get (and should), especially audiology and TSH.

Well I at first was concerned reading the posts to this question since we are going for a PET on Mon. just 6 weeks after TX ended. We heard about false positives from our Dr. and that is why we are going to the Cancer Center we trust for the PET (could be PET/CT). But now I feel that I have a better understanding to hear the results and ask questions, so thank you.

Karen

Don't be concerned, but don't panic if the PETscan indicates a problem since Emmett's remaining tongue tissue has been thru radiation which routinely generates false positives. IMO, post radiation PETscans on tongue cancer rank right up there with PSA tests as something that looks good in theory but is found lacking in practice. Still, when the results show no abnormal update of the radioactive sugar, that is very comforting. It's only when the healing tissue is having a big uptake that the results of a PETscan are skewed so zero abnormal uptake is a very good result and one that I wish and hope is your result this Monday
Charm

I am sure e PET is a very useful tool. I guess because it is still in e trial phases here in Canada - getting it done would be a waste. Not because it is a good diagnostic tool - but because the dr.s may not be interested in the results. I gather that because they have a machine at PMH and since my dr. hasn't sent me for it- then perhaps he doesn't use it for a diagnostic tool. He was really waiting for the MRI - once he got it he booked me for surgery.

Thanks all of you for your input it has been invaluable! You guys are amazing and knowledgable - I'm lucky to have found you all!

I questioned my oral surgeon here in Manitoba about the use of PETS vs CT'S and he is not a fan of pet scans due to the number of false positives. I am sure it is an issue of some debate, but I know the American system almost exclusively uses PETS while we use CT'S. I don't know if there is a cost difference in the scans, but certainly if there is - that would be a cost that the US doctors would be recovering from their patients or insurance companies. My doctor also said that they tend to use the MRI's pre surgery to define the depth and breadth of the cancerous area - not necessarily as a diagnostic tool.

Would be interesting to hear the forum's thoughts on this.

Donna

Donna,
that's not entirely true (although it would seem that way since a few here get them on a regular basis). The PET scan is indicated for diagnosis according to the NCCN guidelines, but more than a few here have not had one (ever) and it's not common that they are given as a followup scan. PET scans are very expensive - as high as $3500, way more than an MRI or CT. I am not surprised about your oral surgeons position on PET scans, ENT's (as well) don't like any types of scan, in general. All of my scans were ordered by either my MO or RO. Yes there are false positives while tissue is still healing but the reading radiologist typically takes that into consideration on his report. There are false positives with MRI's and practically every other form of medical/lab test. This is why it is always preferable to have your doctor go over the scan reports and lab work with you.

Once health care rationing has wrecked our health care system, I am sure that you will see less PET scans being ordered.

Here you can pay for a PET scan - however I am not sure how they can do it because apparently the contrast substance is still in the trial phases for approval and use in Canada. It is 2300 - MRI and CTs and everything else is covered courtesy of social medicine. I guess the concern about false positives and the fact that it is still in the trial phases is why it isn't widely used.

@Cheryl
I came across this link to the BC Cancer Agency guidelines for Head & Neck Cancer:

http://www.bccancer.bc.ca/HPI/CancerManagementGuidelines/HeadnNeck/default.htm

I would think this would be the same throughout Canada.

The Diagnostics section goes into the pros and cons of CT's, MRI's and PET scans along with recommendations on when each type of scan should be used.

These guidelines, similar to our NCCN guidelines, seem to set a minimum level of care.