Jeanne,

HPV positivity is the biggest positive prognastic factor we have for this cancer in the oropharynx, and elsewhere in the head and neck.

I was looking through your posts, and would definitely suggest you find find out the HPV status, as most are positive in the oropharynx, as mentioned, like the base of tongue and tonsil cancer, 70% of the time, maybe even higher depending on geographic area. It sounds like they haven’t done the test yet, but thought most do now? Sometimes they test for the biomarker p16 positivity, but this does not always prove HPV positivity, although most are, the next step or direct test for HPV, like HPV-16, a positive prognastic factor.

I was never tested in 2009, although testing was available at my cancer center then, but I fell through the cracks, and it didn’t really matter then, but now they have clinical trials, if needed, and better prognostic factors, maybe minus any smoking history by pack years. They should keep the biopsy slides for a number of years on file, I thought 7, so they can still find out the test results. Later on it can prove difficult to get, may be needed, so it’s better to ask now.

On another note, i think it’s good your husband has a peg tube, I did. He can always not use it until it’s needed, but it wouid need still to be flushed, and oral/neck exercises maintained wether he uses a peg or not. These days, they want most patients not touse a peg tube, but that’s decided on an individual basis.

Good luck