When my son's PET showed areas of concern, they followed up with a CT scan. When a later CT scan was troublesome, they followed up with a PET. As far as I understand, the PET often shows false activity in areas of inflammation. The CT sometimes lights up in areas of scar tissue.

Things sound like they're going good!

Jam --

I have not been seen at a CCC. I think the closest would be MD Anderson.

Thanks Edeevee!

Hey Frank - LSU N.O. has a CCC
http://www.medschool.lsuhsc.edu/cancer_center/patient_care.asp

MD Anderson is certainly one of the premier centers tho.

Kevin

You just can't beat a CCC as I found out. Best you go to one near you.

Thanks Kevin and Jim!

Is LSU NO back open from Katrina?

Ok...

So I go to the ENT's office to p/u copies of medical records for the insurance company that the ENT had ready for me. I ask the receptionist for the records and she hands me an envelope.

Now, follow this, my follow up appointment to get the results of my PET was scheduled for 12/4. I was told after the PET that the radiologist would have them read by the afternoon of the test. I asked for an earlier appointment since the results were probably in. She told me they did not get them yet but did move my appointment to 11/26.

I get home and am curious about my records thus far. I open the envelope and begin looking through the forms. Well I guess you already know what was included in the records...

That's right, THE PET report! So I am asking for some interpretation...

Neck: No evidence of hypermetabolic activity. Normal physiologic activity is identified.

Thorax: No evidence of abnormal hypermetabolic activity or suspicious nodule. There is a 2.9cm soft tissue density just left lateral to the AP window. This demonstrates borderline hypermetabolic activity of SUV 2.5 and is non-specific.

Abdomen/Pelvis: There is no evidence of abnormal hypermetabolic activity. Normal physiologic activity is identified.

So my interpretation is that I seem to be clear of oral cancer but now am concerned of something in my lungs? The radiologist writes in the "impression" section of the report, "...further evaluation with a dedicated enhanced CT of the thorax may be helpful as well as close follow-up. A non-hypermetabolic metastatic focus is felt much less likely in this location." Any idea what that means?

I now think I need to look into getting to the cancer center to check this out as I believe this is now out of my ENT's realm of expertise.

Could this be lung cancer? I don't know. You guys have been so helpful these last few weeks. Can anyone shed some light on this? Thanks!

Frank, one of the most incredibly frustrating things about this experience is the ongoing "hurry up and wait". It is astonishing to me that when one is dealing with one of the most deadly diseases in the world, waiting for test results (or being able to get a timely appointment for ANYTHING) seems to be business as usual. I know that most cancer centers and oncologists are buried with patients. This stuff (in all forms) seems to be epidemic. Getting your oncologist's nurse to return a call seems like a major accomplishment.
Re: question about lung cancer....my oncologists told me that a common site for metastisis from oral cancer is the lungs. However, though this is not a typical thing, I believe that keeping on top of the situation, including demanding timely appointments with the doctors and tests (PET/CT) is extremely important. You have to be your own advocate and understand that there are thousands of other cancer patients fighting for those resources.
And, I would definitely travel to a true center of excellence such as M.D. Anderson in Houston, regardless of inconvenience.

Frank: Take a deep breath....one of the experts will be along shortly to give you an understandable explanation of your scan results. The only thing that I will say is that my personal research on the topic of PET scans leads me to believe that they are NOT always to be believed!
Don't freak...it doesn't help....obviously, further tests are warranted. Try to concentrate of the positive results which appear to confirm the absence of oral cancer.
Keep us posted as to your progress, and know that we're all thinking of you during this trying time!

Lois & Buzz in NC

Frank, This is the reason that patients should not receive their reports without professional interpretation and guidance. I guess it was an accident for you to get it then. HOWEVER, you DID receive it, and it was their fault that you did, so now I would call tomorrow and insist on a consultation to explain them and to ask the ENT for direction. I think that you need to go ahead and get the CT scan and hear the analysis.

OR....you can call MDAnderson and ask their advice. Ask if you should go ahead and get the CT locally (or in N.O.) or if it would be better to come there and begin a workup, beginning with the PET scan and letting them do the CT.

I am told that LSU's head and neck department has moved totally to Baton Rouge. You can check with Splenda on this forum about that. She lives in Madisonville, close to Covington on the North Shore of Lake Ponchartrain. I went to her prosthodontist in BR, and he told me that his business has really picked up now that the H and N Department has moved there.

My surgery was done at LSU in Shreveport. I went to MDA for some second opinions after my surgery, but they agreed that my treatment was appropriate.

If I have more cancer, I will go to MDAnderson for sure. It is not far from you in Houma. I just had a minor surgical (not cancer-related) procedure done in Houston this past week, and the drive is nothing much.

With LSU in disarray, I would go to MDA and know that I had gotten the best advice.