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.

Tuesday, 17 December 2013

Giddy-up, jingle horse

Ho ho ho - I made a christmas cake. It is Delia's recipe, except that I didn't have brandy so soaked the fruit in Amaretto. I even bought a special cake tin from restaurant supply shop in Rotorua, because Delia says that the secret to successful baking is to use the right-sized tin.

Smells delicious!

I offered to swap this cake for a raft trip at Okere Falls. And Tom at Foris has agreed, so I'm delivering the cake later this week. Anyone want to come down the river to help balance out the raft? Can't wait!

Sunday, 15 December 2013

Swell and good

Followers - you may want to sign out now. Oh, I'll try to avoid the cliches, the ones that go like this...My 'fight with cancer'. Or, another common one, my cancer journey. This supposedly wonderful window of opportunity, bringing with it the chance to finally fully embrace life and live for the moment, cherishing each day and enjoying the sunshine. Every single time I sprout one those awful phrases, PLEASE please kick me. Promise? And really folks, feel free to sign off. Maybe it is not going to get nasty, but it might.

So I have not been posting anything lately because a 40-hour job and the garden have been taking up most of my energy. I began a new blog, Journeying, for my New York trip in April this year. Now I'm having a break from work again. When I talked to my boss a few weeks ago about my desire to resign, she said that HR would not accept my resignation. The option of leave without pay was discussed. I have 4 weeks - until after Christmas.

In the meantime I am truly swell and good. Not long after the New York trip I saw a lump on the side of my neck. That was seven months ago. The GP sent me to see an ENT specialist at Rotorua Hospital, who first did a needle aspiration (negative) and then an ultrasound, and finally a couple of months later decided to operate and take it out. That involved day surgery in Rotorua and a delightful week at home reading lots of wonderful novels - if you are interested, check out the Rotorua Library's Pinterest pages - one of them lists my favourite reads.

When I had my follow-up appointment a week or so later, he greeted me saying "You came alone. Your'e very brave". Clearly not good! He wrote down on a slip of paper "High grade Basaloid squamous cell carcinoma" and I tucked that bit of paper away so carefully that it never ever resurfaced. All along I been researching possibilities, lymphoma, rheumatoid nodule, harmless branchial cyst. I had it down as a 50-50 chance of being either nothing or lymphoma. Now I had something completely unexpected to google. The lovely ENT man sent me off saying that I shouldn't worry, that what HE was paid for, and it was very treatable, caught it early, etc. A week later I had a PET/CT scan. Radioactive tracer is flown up from Wellington and injected, and afterwards you exit by a side door having been told to avoid pregnant women and children for the rest of the day.

Somewhere during the waiting time that followed I saw my GP, who gave me a copy of the pathology report regarding the lump, and took a punch biopsy from a red spot on my chest that  had been previously zapped with nitrogen a couple of times. Why don't they just cut out these suspicious skin spots on the spot, which is what has happened several times in Australia? The long-term costs of that short-term penny pinching must be horrendous. The results came back indicating SCC, hello, is that a surprise?

SCC that has metastasised to a lymph node seems to be fairly serious. In several places I have seen research that shows the survival rate after 5 years is kind-of like 50%. As I have found out, for metasasis (seriously, I love that word) to appear on the neck almost always indicates that there is a primary source somewhere in the throat area. Head and neck cancer is the official phrase, and it is the 6th most common cancer worldwide, despite which I had never heard of it before. It is one of the fastest growing cancers - that is, statistically. One of the reasons it is on the increase seems to be that is often linked to human papilloma virus (HPV). Three out of four cases are in males. Who knew that skin cancer could arise in the throat - or for that matter in other parts of the digestive canal.

It is also quite common that no primary source for the cancer can be found - maybe because it can form deep within the complex structure of the nose and throat. So far this seems to be the case for me. The PET scan showed very mild activity around the tonsil area, but within normal range. I had to wait weeks and weeks to hear what the results were. Then in the same week I got appointment cards for both Rotorua and Waikato ENT clinics.

In Hamilton I was seen by Dr Theo Gregor, who scowled at the scar on my neck, and then chatted to his registrar about why the radiotherapy unit closes at the weekends. He gave me little information, just a piece of paper for the nurses to process - Fast-track Cancer Diagnosis. Four days later I was back at Waikato for another general anaesthetic, this time biopsies of the throat. At the same time the patch on my chest was cut out.

Then another long wait. Weeks of knowing nothing. I have another appointment card, so the story will continue.

BBC news today --

The number of people being diagnosed with cancer in the world each year has leaped to more than 14 million, the World Health Organization says.
The data for 2012 shows a marked rise on the 12.7 million cases in 2008.
In that time the number of deaths has also increased, from 7.6 million to 8.2 million.