Wednesday, 25 December 2013

Why this? Why me?

I remember that when I was about to have an ovarian cyst operated on some time ago, the surgeon popped by on a pre-op visit and as he was headed off he asked me if I had any last minute questions. "Why did I get this?" I asked, and he gave one of those smiles that is not a smile. "That's the million dollar question but we don't worry ourselves about it, we are here to treat it", he said - or something along those lines. Despite that being a perfectly reasonable answer under the circumstances, the effect of his answer was to make me feel very small and stupid. It rankled, felt like that my most important concern was made into something amusingly trivial and obtuse.

Over the last six months as I have thought quite a lot about cancers of the head and neck, and throat cancer in particular, the question of why, or why me, has hardly figured. It is what it is. The literature says it is the 6th or 7th most-common cancer which makes it sound quite ordinary. On the other hand, I have read that CUP or Cancer with Unknown Primary, which is what I really have, accounts for less than 3% of total cancers. which would make it quite rare in terms of the everyday person. Plus, it usually affects males (3 out of 4 cases) who are heavy smokers and/or drinkers.

I very much like to spout that I have one of the rarer types of cancer, but that I am right on trend nevertheless, as in a general way I aspire to be in all facets of my life, in that it is the fastest-growing cancer today.

The medical system of course does not recognise ME as being this prescient, fascinating and unusual person with an uncanny knack for picking what is most topical and relevant. No. When I walked in to my appointment with my specialist despite having been kept waiting for almost an hour, I had to sit in silence while he read through the case notes. My case notes. Is this a technique designed to remind you that you the person are totally irrelevant and the only thing that is important is the clinical details of your case? For that is the effect. And no doubt, the truth.

Over his shoulder the only bit that I could read said

A challenging case.

Hmmm, I could have told them that without having to have two lots of surgery and a PET/CT scan.

He told me that the biopsies were inconclusive, just as the PET scan was. Rather than do further biopsies, they would start radiation at the end of January. No discussion of the side effects of that, and certainly no discussion around whether I wanted to have that treatment.

He poked around down my throat while I gagged on his finger - charming I'm sure - and then grabbed hold of my tongue using a paper towel and yanked it firmly to the right and then the left.  The indignity of it. I wondered if the man had eye-liner on. His lower lids had this dark line. The biopsies had not healed and there was some rawness that could be indicative, of what he didn't really say. When I said that my neck had begun to be a bit sore, he murmured something about disease activity and said the treatment would be directed at that.

He did have some good news for me though. I tested positive for HPV-16 virus. Human Papillomavirus. For some reason that they don't understand the success rates with radiotherapy increase dramatically when HPV is present. He said the odds were about 88% for success. As opposed to things I had read that gave the likelihood of survival after 5 years at 35 - 45%. In fact he said that of the 18 or so cases he had treated, all but one had been successful.

So that made me feel much better.

And now what I wonder is, what is the link between a virus and cancer, and why is not being researched? There is this article in Nature.
 “In Europe, HPV-positive oropharyngeal cancers have almost quadrupled in number over a period of 10 to 15 years,” 
There is research, and what is known is that the virus' DNA occupies normal cells and uses their machinery to generate proteins that cause a couple of key tumour-preventing proteins to stop working. One of those critical proteins is silenced but not shut down completely. In non-HPV related cancers, that protein is actually itself mutated. Somehow radiation and chemotherapy allow that protein to work again in people who have HPV. Whew - it is a seriously a good thing to have HPV.

...HPV-16, [is] a particularly dangerous strain and the main cause of cervical cancer. [There are] two vaccines approved to prevent cervical cancer.
Vaccination for oral cancers is unlikely because to prove it is efficacious would involve doing tonsillectomies on healthy folk, and that ain't gonna happen. Plus, most people who get HPV don't get oral cancer. The risk increases with multiple sexual partners, but it is not known whether oral sex is implicated.

All very interesting. I don't really care about the why me, but this is all quite fascinating.

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