A service announcement. I've been searching for a literary way to raise this, but these panels from Watchmen showing Edgar Jacobi (aka Moloch, a retired master criminal) sum up the situation as well as anything.
This week I start chemotherapy for moderately advanced metastatic cancer in the lymph nodes of my chest and neck (the initial diagnosis of cancer followed a CT scan at the beginning of July, but precise identification and treatment formulation took rather longer). There's so far no identifiable primary tumour, and if I have what it currently appears to be - a syndrome called "cancer of unknown primary", aka CUP- the prognosis is not at all good: the treatment aim is delay/remission rather than cure.
They're giving me a "best guess" chemotherapy - cisplatin/docetaxel combination therapy - based on the location and histology of the cancer. These days, this is actually a pretty good option: not exactly a guess, but an informed clinical decision based on location and cell types. The lymphatic system is the body's drainage system, and where lymphatic metastases turn up gives a good clue as to whereabouts a cancer has come from. So I'm getting these two drugs which target the cancer types from the two main options: lung and throat.
The nasty aspect is that there's a significant chance - maybe 50/50 - that the chemotherapy won't have any effect. This I'll only know after several treatment cycles (dosing every three weeks). The rather frightening raw stats are median survival rate of 3-4 months after diagnosis, 25% one year survival, 10% five year survival. But I'm otherwise fit and well at present - so far it's all going on at a subtle level that only shows up on scans - and trying to keep an open mind about time scales.
I know this post is going to be a real downer for many readers I've known for years now, but I'd rather explain the situation than bury it under taboo and mystique. I'm not going to devote much space on JSBlog to writing about it - "lymph node bores" who document every daily up and down of their illness and treatment can be a real drag, undoubtedly worthy though the endeavour is - but the focus may change: less reading, and more photography and travel.
I've not much else to say about it at present, except to apologise if I'm slow responding to e-mails - it's a complicated time. Oh, and don't e-mail me with recommendations for quack remedies: whatever the weaknesses in the system, mainstream evidence-based treatment is still the best shot I'll get.
- Ray
Update, 14th November 2012
I'm very well pleased. I had a call from the hospital today with full results from a repeat scan last week: "improvement in all areas" - the metastases have shrunk measurably. After just three cycles of treatment, it's still very early days; but getting a response to the chemotherapy is great news, with hope of a longer rather than shorter survival time.
Chemotherapy hasn't been too bad. The three-week cycle consists of a very boring day in hospital on a drip, followed by a couple of days feeling a bit tired, then 3-4 days a real bitch of aching all over, a week feeling OK but exhausted, then a final week feeling pretty normal before it all starts again. And a lot of pills to take.
I'm otherwise fine: no symptoms apart from those caused by the chemo (including baldness, though my eyebrows stayed). I'll know about the precise treatment plan at my next hospital appointment at the end of the month. But it'll most likely involve continuing the chemotherapy into the beginning of 2013, perhaps with some radiotherapy to follow.
Update, 28th January 2013
I saw the consultant today and got the results of a recent full body CT re-scan: "stable". If not as positive as further shrinkage, it's an OK result - existing tumours still shrunk, nothing new, and my overall health fine. Tomorrow I have my last chemotherapy (for the moment) and am then signed off for three months - no radiotherapy for now, which is also good - after which I'll get another CT scan.
The downside is that CUP is a very unpredictable syndrome, and they can't give me even a vague prognosis except that the cancer will come back - maybe even before the three months are up. (Possibly the most chilling point of the conversation was when the consultant rather pointedly sidestepped answering when Clare asked about my prospects for our wedding anniversary in September). I am, they say, in "the better prognosis group" (because - to put it bluntly - if I was in "the worse prognosis group" I'd well likely be dead already) but this doesn't seem to have any clear predictive implications about what length of remission, if any, I can expect.
Since I still don't have any symptoms beyond those from treatment, I'm increasingly resigned to just getting on with life, with as little time-wasting as I can manage. As I said on the main blog - Bright start - I have every intention of enjoying 2013.
Update, 2nd April 2013
Still feeling fine: much fitter and well-er for having recovered from the chemotherapy. In March I got in a couple of solid walks (one on the Jurassic Coast with a friend, one with Clare on the Isle of Wight when we went down to see my Dad and family). My hair is growing back - distinctly whiter than before the treatment, but I can live with that, as well as with very numb toes, and slightly altered sensation in my fingers (a mild case of the peripheral neuropathy that's mentioned on the side effect list). Fortunately it hasn't affected my fingers enough to disrupt playing the accordion. But it's coming up to a scary point: the three-month repeat scan is in a fortnight, and I'm distinctly jittery.
Update, 29th April 2013
Excellent news: we saw the oncologist today, and the scan results were stable again. Nothing new. Of the existing metastases, some have no change, some are very slightly larger, and some very slightly smaller - and the changes are small enough that they might partially be accounted for by random measurement variation. So - I'm still in remission; no new treatment is needed for the moment, and I'm signed off for another three months.
Update and thoughts, 4th June 2013
I'm coming round to the consideration that I've been lucky under the circumstances (while it ain't exactly "lucky" to get cancer) that this was caught early. I didn't tell you the background of the diagnosis. It came about through a cough that hadn't properly cleared up some months after a very nasty winter bug. I was referred for a chest x-ray, and an enlarged lymph node showed up on that. By the time of the x-ray appointment, the cough had stopped - it seems to have been irrelevant. So, I guess, the cancer was caught long before it became symptomatic. I have the accident of that bug to thank for an early diagnosis of a syndrome that's normally spotted rather late. Anyhow, it's Spring 2013 and I feel fine. However it goes now, I've already had a great deal more - in time, and everything else - than I expected last September.
Update: 29th July 2013. "Summer's lease hath all too short a date"; the latest CT scan results show the remission is over. This wasn't unexpected, so while it's disappointing news, it's not devastating, and there's a good chance that further treatment will hold things off a bit longer. I'm to have a new round of a different combination chemotherapy, GemCarbo, in three months' time (all being well).
How this came about: I did ask - stressing that I appreciated no precision was possible - for a ballpark figure about survival time. The oncologist said "Three months ... to three years". Great.
So the three months is my personal decision about a scary optimisation problem: doing it straight away could have a more substantial benefit in terms of survival time; but do I want to spend summer feeling rather crap as a trade-off for that uncertain benefit? I opted for delaying, as I'm still asymptomatic and having a great time of what's turned out to be a very pleasant summer. The oncologist saw it as an acceptable choice to defer the treatment until October, and go for a "watch and wait" approach, with the option of starting sooner if I show any signs of getting unwell. We'll see what happens.
Update: 3rd September 2013. Silver! - I'm pleased to say I didn't miss out on our Silver Wedding Anniversary.
Update: 28th October 2013. The plan worked. A repeat scan last week showed things are (in the words of the liaison nurse) "progressing but not galloping": a bit more enlargement in the originally affected lymph nodes, but not major; nor do I have any symptoms, or any sign of involvement elsewhere. I saw the oncologist today, and there's a welcome change of plan; as I'm still OK, they advised - and I was happy to go along with this - continuing the "watch and wait" approach for another three months.
I say "welcome" - but it's actually a combination of welcome and unsettling. Of course I don't want bad news, but you get into a mindset for coping with a specific situation (for instance, the possibility of being dead in three months), and when that situation changes to a newly uncertain one, even if it's slightly better, you're suddenly thrown into having to revise all the coping strategies. And I'll have to do my tax return. :)Update: 27th January 2013. Wow! Excellent news: my latest scan result summary is "stable" (no measurable change over the past three months) - and this is without further treatment. I'm signed off for another three months.
Continued in It ain't that kind: a year on >>>
- Ray
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