Here we go again. Leon had his annual PET Scan last week. When I called the doctor for his results he said the scan came back good but there is a slight uptake in his surgical bed and BOT (where the cancer was). Recommendation was to scope him on next visit, which is Friday. Leon is now 16 months post treatment and I am worried about the uptake; shouldn't that be gone by this amount of time since end of treatment? He gets scoped everytime he sees his RO or ENT which is about every 3 months at this point. Should I be worried?

One question is whether or not that uptake was present on previous scans. Inflammation and increased cellular activity associated with healing will cause increased uptake. I hope that that is the explanation, though if it was not there previously, it has to be looked into.

I asked my husband's ENT at Hopkins what he would do if one of the PET/CT scans came back with a "suspicious" area -- that is, a hot spot in a later scan which had not been present in an earlier one. He said that first, he might do an MRI to get an idea of what was going on the soft tissue and also, biopsy the area if accessible (which BOT would be), before proceeding.

However the ENT also said that he was not a great fan of PET scans since, even with an acknowledged top expert at Hopkins reading them (who only reads H/N and brain PETs) there are enough false positives that our ENT doesn't get panicky if something like you describe shows up. He does check it out thoroughly of course. However he has done surgeries based on PETs which showed no cancer, and has become a skeptic.

Athough Hopkins had initially told us they would do PETs at 1 and 2-year points , they have changed their protocol on this. Barry is now 2 years out from dx. and sees one of his Drs. about every three months (in part this is because of the vaccine trial he's in) -- and has a physical exam only. He had a diagnosis like your husband's, had chemoradiation and tonsillectomy only. He was HPV+.

(Which brings up the point, since your husband has a tonsillar SCC, and the majority of these appear to be due to human papilloma virus in non-smokers, has he been tested for HPV? This is important, it affects prognosis (better) and recurrence rates (lower). In fact our RO told us two weeks ago that all centers should be testing for this, although it does not *at this time* affect initial treatment it may in the future. As it is, our ENT no longer does ND in HPV+ patients who have shown a complete clinical response to chemoradiation. It is medically useful, says our RO, for centers to know which patients fall into which category, it will provide useful information on efficacy of different treatment approaches for these biologically different cancers.)

Gail

I had the same thing on my last PET--some "suspicous" uptake (ie. in the area of uptake that is "marginal" and is unclear whether it means something or not). The PET was done when I was about 20 months out from treatment. The ENT had me in for a thorough exam with the scope and they also did an MRI as followup. Nothing showed on the MRI or the exam.

The areas (all "Marginal") were on the BOT and two lymph nodes. And they were not there on the PET I had had 10 months before. However, about 4 weeks before the PET I had had surgery to remove the stent that was in my esophagus (long story why) and dilate my throat. As a result I was doing quite a bit more swallowing, which could have caused some BOT irritation and the glands could have been affected by the surgery. And of course they were using something with a camera to do that surgery and definitely would have noted anything they saw that looked like cancer.

It has left me a little anxious but last year when I was worried about my swallowing and looking for a surgeon to help me with a near complete esophageal strciture, I went through an ENT at Mass Eye and Ear and mentioned to him during my visit that I had had a clean PET a few months ago. He said, basically, that that was good but they didn't do PETS anymore at all there because they gave so many false positives (and this was with someone expert at reading H&N PETs).

So I think the best thing is to not worry too much right now. Though I have to admit, ever since that PET I had, I am a little worried about myself and it definitely put a damper on celebrating being two years out. I figure that if six months from that PET (which would be August) I still have no other signs of recurrence and still am getting clean exams otherwise, I can probably not worry about it.

Nelie

Hi Rhonda,

Just to throw in my 2 cents here, I have never had a PET scan. Not before surgery nor after.

As you can tell from the above posts, the trend at some of the top CCC's appears to me to be moving away from PET scans due to the many false positives. My surgeon, too, does not beleive that these scans are helpful and does not order them for any of his patients. I do believe that this removes some of the anxiety that we all live with about that second most dreaded word, "recurrence".

I wonder if a study was ever done to show what percentage of positive post treatment PET scans were actually cancer. I can't remember reading where any one here had a second round of treatment based solely on the results of a PET scan. I know my memory is not that great, but it would be interesting to see if this is the case.

Jerry

I want to thank every one for their responses. Leon went to see the RO on Friday. He feels that there is nothing to worry about. The slight uptake was in his last PET Scan too and he feels that this is normal physiological changes. I told him that I heard doctors were getting away from PET Scans and his response was they need some type of test to give him to see how things are going and since Leon cannot have an MRI (due to having some metal in his body)he has to have the PET. RO scoped him and said everything looks great. Leon has no complaints. RO said he will see him in 3 months. ENT will see him next month. So I think we can breathe a sigh of relief? Again, thank you for your responses.

Great news Rhonda & Leon !!!