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