Cheryl

IMO PETscans are NOT worth paying for with the one exception being for radiological planning IF you had radiation to the tongue. I'm biased of course since PETscans have over a 50% false positive rate for tongue cancers and in my personal experience, a 100% false positive rate and then worse, actually missed the cancer when it did finally come back.
Here is a link to one study documenting how easy it is for even good radiologists to have to report possible cancer in the tongue even though the facts are that the healing tongue tissue takes in just as much if not more sugar than a cancer tumor would.
[quote]Conversely, definitive radiotherapy occasionally causes severe muscle atrophy with the disappearance of tumour volume and residual fibrosis, resulting in a limitation in tongue movement [21, 22]. In such cases, the balance of lingual muscle activity may be broken and altered.

Together, the high uptake of FDG in these three patients probably relates to ill-balanced high activity of the lingual muscles after definitive radiotherapy. Radiologists should take this false-positive accumulation of FDG into account when interpreting PET images of patients who have received definitive radiotherapy for the mobile tongue.[/quote]In today's litigatious society, no radiologist can afford not to say it could be cancer since the Petscan results for recovering tongue tissue do indeed mimic the results of a cancer tumor.
Now all my doctors, the RO, the MO, the ENT and even my oral cancer specialist prosthodontist agree that for me, the MRI/CT is the best diagnostic test. The MRI spotted my tumor when it came back.
False-positive positron emission tomography
don't waste your money
charm

My two cents as a patient only, with no medical expertise: since the end of RT (and before it began as well) I've had a PET/CT every six months. I'll have them again in June at the 2 year post- mark, then I think it will go to yearly. I did have an MRI as well as a CT before all this started (and a PET as well....? can't remember), but it's been just those other tests since then. My Anthem Blue Cross of California pays for it, of course after I've met a hefty deductible.

D2

@Gary,
The NCCN Guidelines suggest PET-CT be used in almost all OC situations.

Per the NCCN Guidelines, a standard CT or MRI may be acceptable, but in many case only if a PET-CT is not available.

The Guidelines also recommend PET-CT be use for the initial follow-up after chemo/RT (UNLESS failure is suspected and a scan is need within eight weeks of ending RT).

Please re-review the "NCCN Practice Guidelines in Oncology V.2.2010 - Head and Neck Cancers".

If you download a PDF copy, just search it for "PET-CT".

We need to keep in mind that PET-CT technology is dynamic. I am not aware of any CCC'S in my area that use a PET only scanner (obsolete technology).

It is my understanding that a "state-of-the-art" CT and MRI are complimentary studies and, in most cases, a PET-CT (or more recently a PET-MRI) will adequately overcome the weaknesses of either alone.

I was just curious if it was a useful tool to detect anything that the CT might have missed. So far my CT was clear as was my MRI (3 weeks ago) but I wasn't sure on how small a level that was. So technically there could be cancer cells in - say a lymph node - but none of the machines would pick it up...?
I guess Biopsy is still the best tool. Also increased metabolic activity can come from a lot of things... not just cancer...
I think that is why the doctor's here don't use it as much as a CT or MRI.

thanks for the input.

Yea!!! I was waiting for Gary and Charm to post their responses, they are both so smart with technical things. Both of them know so much more than I do about this type of thing. I knew if they would bring their knowledge to this thread that they could explain it so we all could understand it and give correct info. I completely agree with Charm, about the cost.

[quote=DonB]@Gary,
The NCCN Guidelines suggest PET-CT be used in almost all OC situations. [/quote]

I am well aware of the NCCN guidelines but PET is indicated for diagnostic workup only - not part of follow up care. See Foll-a in the same document - there is no mention of PET scans for follow up care. Personally I think it's a good idea but I can also understand that the physical exam is just, if not more, important.

With improvements in "fusion" software practically any medical image may be fused with another.

The registration of the images would attain the best accuracy if performed simultaneously.

All of this aside, scans are only a small part of the diagnostic process. The direct visualization and palpation exam is still the gold standard. In my personal experience, the scans gave me far more angst than peace of mind.

FYI:

Cost & Reimbursement:
PET scan charges range from $1200-$3500, depending on the type of scan. Insurance companies will cover the cost of many PET scans. Medicare reimburses for PET scans for the following cancers: colorectal, lung, lymphoma, and melanoma, head and neck and esophageal cancers, and also for refractory seizures (epilepsy). Medicare will begin PET reimbursement to initially stage, to determine recurrence and to measure effectiveness of treatment of breast cancer as well as for myocardial viability. These new reimbursement categories become effective October 1, 2002. Medicare is constantly updating reimbursements, so visit the SNM website (www.snm.org) to find the latest information.

As you can tell, I feel passionate about PETscans not being appropriate for follow up care on tongue cancer. They are indeed great for initial diagnostics before radiation as well as helping plot radiation. My insurance does cover them anyway for both diagnostic and followup. Sure a CT can help compensate for the fatal flaw in PETscans, but all the MRI's I have had also have a CT scan done.
I was so upset about my false positives that the CCC agreed to let me sit down in front of the monitor that radiologists use in evaluating PETscans and the software lights up the various areas in contrasting colors that indicate the uptake rate of the sugar. Since normal tongue cancer after radiation takes in more sugar while healing than a cancer tumor coming back, the images indicate cancer where there is none, and miss the true cancer. I had to admit that the images of my PETscan done when I first went into radiation in O7 (for diagnostic and radiation settings) and the color intensity matched almost exactly the same false images on the healing tissues of my tongue on the right side of the October 08 one.. It's not the radiologists fault that the "indicator for cancer" in a PETscan lights up for healing tongue tissue. It's because the basic assumption of a PETscan (cancer tumor takes in more sugar than normal or healing tissue) does not hold true for tongue tissue after radiation. My understanding is that this anomaly does not apply to other types of oral cancer, only tongue cancer. (Or should I call it "throat cancer" like the NCI website).
In fairness to NCI, I have not seen anything on their website indicating that tongue cancer patients should have PETscans for followups. I'm not surprised the guidelines don't support PETscans for follow up in light of my experience.

I agree with Gary that the scans have not given me peace of mind, and in fact only needless worry. I'm grateful my tumor board told me to just disregard the results (and the subsequent surgery did show zero cancer where the PETscan had lit up).

If it makes people feel better to have them, that's their choice. But IMO nobody should worry if they don't get one if they have had tongue cancer and radiation.
Charm

I am a bit confused here, since the original question by Cheryl seem to me to be asking about a PET-CT during DX (workup).

Since she has had a CT and MRI and has been assigned a stage II, it seem to me that a PET-CT probably is not necessary.

The "Guidelines" for "Oral Cavity", Stage II include:
. Chest Imaging
. CT and/or MRI with contrast.

and to consider a PET-CT for stage III or IV.

Don

I read Cheryl's signature to indicate that she was facing Surgery - not Radiation - on Feb 4th. My ENT surgeon had zero interest in a PETscan, it was only my RO who felt PETscans were helpful in the diagnostic stage for plotting radiation. If you are saying now that a PETscan is inappropriate for Cheryl, then you and I are in full agreement.

Cheryl

Best wishes for the surgery. All of my bluster and posting were intended to be supportive and let you know my opinion that you do not need a PETscan nor worry about not having one, let alone pay for one out of your pocket since you have tongue cancer. My ENT surgeon insisted on an MRI/CT to guide her in the surgery which seems to have done the trick for me.

Charm