Just got a call from the ENT's nurse -- PET scan was negative. I have to follow up with him in 3 weeks to go over what we do from here, but needless to say I am relieved, which is pretty much a drastic understatement. This is a scare that sure reinforces the need to not smoke.

I really appreciate the support and strength I see on these forums. Thanks, all.

Jeff

Hi Jeff,
That's great news about the PET scan. But what about the 1 cm lump on the back of your tongue? Did they diagnose what it is? Are you scheduled for any further testing?

When I got my PET scan last year it only revealed the cancer (which they already knew about). That was a relief too - knowing that was the only cancer I was dealing with.

As I understand the PET scan, a negative result is 99.9% diagnostic of no cancer, including the lump. If the PET scan shows a "hot spot", then it may or may not be cancer, as other tissues and processes can cause a positive result. So, it appears that the lumps on my tongue are not cancerous, at least at this point.

I am seeing the ENT again on the 27th, at which point I expect he will advise me on what we should do with the lump in terms of excision or further testing to see whether it is precancerous or just lymphoid tissue.

Jeff

Good News Jeff!

After a scare like that, I am confident you HAVE stopped tobbacco use.

Make sure you do the follow up.

Take care

Count on it, Mark. As I told the nurse, I will stand on my head and spit quarters if that's what the doc wants me to do.

Jeff

When I was diagnosed in Aug 2002. The pathology report indicated SCC cancer but PET scan was clean. I questioned my ENT surgeon, he said that for head and neck cancer, PET scan could be false negative and he was right. The surgical report indicated 4 positive lymph nodes and 2 cm tumor

I guess my husband was also part of that .1% false negative group. He had a PET scan that was clean and pathology after surgery a week later revealed cancer in the tonsil as well as a lymph node.

We're not trying to scare you, but you might want to queston that figure that your doctor gave you.

Anita

There are limits to the resolution of any of the non-pathology diagnostics. I was told that an MRI was down to pencil eraser size. I don't know the limits of PET or CAT scans. My tonsil cancer did not show up on a MRI two weeks before surgery either. In fact the ENT was not able to see the cancer until the tonsil was out, and yet I had 3 nodes positive.

Jeff, You might think of the medical process as a series of hurdles. You cleared one but you need to keep going until you win!

Thanks for all the input. I have plenty of questions to raise when I get with the ENT on the 27th. I will keep you posted.

Jeff

Hi,

I just wanted to add something to this thread.Joe had 6 MRI's and CT's of various parts of his body.They all came up with inconclusive(sp?)results.They didn't know what the extent of the spread of his melanoma until he had his PET scan.I guess the argument can be made either way.
I wish you good luck.

Patty

Head & neck PET scan cancer detection accuracy is more like 87%, compared to 67% for conventional imaging.

+"PET equipment isn't able to reliably detect tumors smaller than 0.7 centimeters. For the smallest lesions, detectable at 2-3 millimeters through CT technology, diagnosis usually relies on observation."

Colorectal has a 94% accuracy and that is the highest accuracy acheivable to date with PET.

The following is an extract from an article about PET/CT:
++"The PET-CT procedure superimposes the PET image, which shows metabolically active sites in the body, on the CT image, which shows the anatomic map of the body to localise abnormal function in the body. This combined image allows doctors to pinpoint the disease areas with a combined 98% accuracy. These scans are highly sensitive and can detect small lesions in the body. CT scans alone have 60% accuracy while PET scans are 90% accurate." <<I was not able to validate the numbers cited in this article.>>


+Stanford Report, February 28, 2001
++Dr Felix Sundram, SGH Head of Department of Nuclear Medicine

Thanks for all of the input. The seminal question I need to ask the ENT on the 27th is "If it isn't cancer, what is it and what do we do about it?"

I understand that PET and CT are not necessarily conclusive. When my ENT did the physical exam and the endoscope, he noted the fullness of the tongue base, which was soft. The CT picked up the two lumps at the tongue base, each of which is just under 1 cm. Wouldn't the PET have shown that these were metabolically active?

As was said in the posts, just a series of hurdles. I am going to do what is necessary to insure that we get to the bottom of this. While my initial elation is tempered by what I have read, my anxiety level has dropped, which is a good thing.

Thanks again for all the support and wisdom. I'll keep you posted.

Jeff

Jeff,

You have an EXCELLENT attitude! You have enough knowledge to keep your dr's on their toes. Please realize the common thread here is diligence, and you clearly will follow through and that is great!

Hi Jeff,
just to reiterate what Mark said, we are not trying to scare the crap out of you, just to insure diligence and thoroughness (we wish we COULD scare the crap out of Eric from Arizona :p ).

On a more serious note, I had many health care professionals in my mouth for months before I got an accurate Dx and it is very likely that it had a major effect on my staging. I am not the only one here that this has happened to.

Since oral cancer is not the kind of disease that EVER gets better on its own, we always tend to advise the most accurate and early diagnosis possible by the most qualified individuals (if at all possible at a comprehensive cancer center). It is the best life insurance policy there is. On ALL of the cancers showing statistical survival improvement, early detection and intervention was the key. This is why Brian has a major educational effort going on in the dental industry.

Brian could use your support as well. At this time this site is self funded by contributions from its members. So keep this in mind when making charitable donations -the life that gets saved here may be a loved one or even your own.

Gary,

That was a good one! Hope Eric from AZ sees it. Ha! Ha!

Rosie

Oh cripes it took me a day to get it!

(it is funny though)

I appreciate the humor and the words of wisdom. I certainly do not plan to shrug this off at this point. OCF will also figure prominently in my charitable giving plans.

I will keep you all posted.

Jeff

Gary -- your post worked... consider the crap scared out of me for the time being... Things are much better on that front right now... also, saw my doc on Friday and he said things were healing nicely in my mouth and wrote these wonderful letters on my chart: NED (No Evidence of Disease)... I like Ned!

Humor is good medicine...glad Minnie got a good laugh...