Do whatever makes you comfortable. If it's both of you tested and you can swing it, then do it.

There is no practical oral test right now for either of you.

The only reliable test for Oral HPV is by doing a biopsy of suspected cells which after being confirmed as SCC cancer can then be sent to be tested for HPV by a recognized HPV testing facility.

My point exactly. No doctor is going to remove tissue to do an HPV test.

ok, thanks, I just need to wait for the results of my smear then. And martin needs to ask his consultant. As he voluntered to donate samples of his tumor and cells for research, they might still have them and might be able to test.

My partner was diagnosed with locally advanced tonsil cancer in August last year. He was 48 at the time and although he gave up smoking 5 years previous, he had started smoking at an early age. Thus we were led to believe that the cancer was smoking related. (He has never been much of a drinker)

During the last year I have been reading up on head and neck cancer and have become increasingly interested in the HPV link and as he had a cystic presentation I have started to wonder whether his tumour was HPV positive. As my partner has decided that he wants to know as little as possible about his cancer, I don't feel able to ask questions about the tumour histology etc during consultations in case I upset him, but I would be interested in your opinions as to whether you think it is a possibility.

I think the first sign that something was wrong probably occured in late 2007 when he had a swelling in his partoid gland that seemed to go away after antibiotics. In May 2008 a large swelling suddenly appeared in his neck and after a few rounds of antibiotics he was referred to a specialist. FNA results came back negative and the consultant decided that it was probably a branchial cyst and elected to excise it in mid July, by which time Chaz seemed quite unwell and had suffered on an off with a bad cold and bronchitis. In a post op discussion the surgeons were sure that it was indeed a benign branchial cyst and thus we were extremely shocked to be told 3 weeks later, during a routine follow up that he had SCC cancer. He was subsequently sent for a PET/CT scan which revealed a possible small primary in the tonsil fossa (max SUV 8.7 - although this was not clinically evident and no radiographical evidence of any other disease in the neck. He subsequently had a tonsillectomy/ which was called a biopsy. Again after the operation the surgeon said that the tonsil looked 'perfectly normal', but the histology report confirmed SCC. Unfortunately I don't know anything about the tumour grade etc. We werent told then and my partner never asked. Does this sound as if his cancer could have been HPV related?

A fairly recent study has concluded that a little over 70% of all SCC of the Orophrynx region which includes the base of tongue and tonsils is HPV related but obviously the only way to determine that is sending his confirmed SCC slides to a recognized HPV testing facility.

Caths,
I think it is common for biopsy tissue samples to be kept for several years. So, I would ask that your partners be tested for HPV.

The 2009 NCCN Practice Guidelines for Cancer of the Oropharynx region now recommends HPV testing and just in the last year (or less) a lot of Cancer Centers have geared up to provide HPV testing.

The Center I was treated at didn't have the expertise to do this test until last December and now they are going back and testing the last five years of Oropharynx cases (something to do with supporting a research project).

Since HPV-SCC seems to have a much lower recurrence rate I think knowing (one way or the other)should matter at lot.

The law is they are kept for 7 years. However, their positive or negative nature reflects that moment in time, and perhaps not the situation today.

While survival advantage exists in HPV positive patients, I personally do not believe that it should change any of your follow up screening and scanning protocols yet, once your treatments are done.

Hey, Guys, you are mentioning practices and laws that apply to the USofA, and of use to USofA readers, but Cath is posting from the UK where the practices and laws may be quite different.