I have a biopsy scheduled for March 1 on my tongue and tonsil area. I feel optimistic that it will be negative but I am mentally prepared for either result.

I am curious to hear what others experienced when they were in the unfortunate position of learning that the chemo and radiation Tx did not eliminate the cancer from the primary site. What kind of symptoms did you experience?

In my case, I finished treatment on October 7 and had my follow up PET and CT scans in mid-January. The clinical exams from two MOs and the RO were encouraging. Everyone thinks from the clinical exam that I look OK but the PET and CT show that there is still something there. The PET says there was a significant reduction in the affected area, but there �continues to be asymmetric FDG uptake in the right throat having a maximum SUV of 4.9 (prior 13.8)�

I will know soon enough, but I wanted to follow up on something the RO said to me. He remarked that until only a few years ago there were no PET and CTs and that some countries still do not rely on them as much as we do in the US. He said a Canadian colleague commented to him recently about the importance of the clinical exam. He said these cancers, particularly with HPV positive, respond well to Tx. There is a high success rate. He said that in the case where there is a recurrence (or in this case the cancer may have never got eliminated), �you usually know it when you see it.� I asked him what you see and he said that generally the patient �looks crappy and feels crappy,� and he said �That is not you.� This is at a top 30 CCC in the US and of course he was not saying that as a medical opinion, but just to help me lift my mind out of the medical reports and look at the bigger picture in a common sense way while awaiting the biopsy.

So, I ask my friends here. In cases where the Tx did not eliminate the cancer from the primary site, did you seem to know it in your heart of hearts? Was there lingering pain that just did not get better? Was everything not right � appetite, color, energy level, etc.? Or did you think you were doing great and it just came out of nowhere?