Doing the math..

Day 123

General status update

FEC cycle 6, day 8

Fatigue/weakness: infinitesimal, but definite, signs of improvement. The slow shoots of spring are finally stirring inside me, as the tide of poison shows signs of being on the turn. Today I am up, dressed, and starting to do things, albeit  very slowly indeed..

Nausea demon: he let me sleep in until 5.30 am today – better. And today both the nausea and toxic stomach are at last beginning to wane – FEC6 will still be around for some days, but is beginning to lose its toxic grip.  AND THERE WILL BE NO FEC7!!!

Anxiety level/insane euphoria (+/- 1-10,000): anxiety increasing as we move into the ‘no immune system’ second week of the chemo cycle – my job now is to be hyper-vigilant about avoiding a last dangerous bout of infection, which could potentially threaten my upcoming trip to the Aegean for post-chemo R&R in 4 weeks’ time. BigSisFo, who will be accompanying me, keeps ringing up to remind me of this, and urging me to institute ever more draconian anti-infection measures. R has yet to agree to the proposed post-return from work whole body Dettol sheep-dip arrangement, though.

Despair Demon: the Chemo Muse has imprisoned him in the airing cupboard again using the simple expedient of pretending that she wanted to play bondage games. Now he’s gagged, bound, and wedged neatly in amongst the towels, and instead of that insidious voice constantly dripping poisonous thoughts into my ear there’s only the odd bit of muffled banging. Excellent.

Chemo Muse: today has been all about Getting a Grip again post FEC6, and she’s been helping me get me back on track in various ways – I wonder if I might be able to keep her on afterwards as well, as well as Chemo Brian?  Have I consumed enough Dexys over the last 4 months to alter permanently the structure of my brain, I wonder?

Chemo Brian: I’m sorry I was mean about his pony-tail yesterday; it was the FEC speaking. You know I love him really, and his pony-tail, and his little woolly rat familiar. They are the Sofa Crew, and they soothe my chemo-ravaged soul.

State of mind: Definitely feeling less demented today, as my physical state at last begins to improve.  And they say there’s a distinct possibility that the sun may come out in southern England for at least several minutes on Sunday, so there’s reason for optimism all round.

Previously on Chemo Nights: After  a diagnosis of grade 2 Invasive Ductal Breast Cancer in September 2012, and  a lumpectomy operation at the beginning of October, the pathology results show  a single micrometastasis in my sentinel lymph node, which means that I must have more treatment of some kind apart from the local radiotherapy on the affected breast. Of the treatments on offer, chemotherapy seems to be the one offering the least chance of long term physical damage, and my first meeting with an oncologist is arranged to discuss this. Now read on…

It is rather unfortunate that two days after hearing the bad news about the micrometastasis in my sentinel lymph node, I manage to knock one of my front teeth out. It has been a little wobbly for some time, and I’ve been careful, but on this Friday morning in October I bite into an apple without thinking and suddenly it’s hanging on by a thread, and then detached, cueing a major meltdown.

At that precise moment it feels as if the entire forces of the universe are lined up together, uniting to torment me; I start to cry and cannot stop. Cancer, chemo, teeth falling out – what next, a plague of locusts? I am crying so much I cannot make a phone call  to the dentist for an emergency appointment, but as my dentist’s surgery is part of the complex of buildings in the this mansion block, I can just hop into the lift and be down there in 2 minutes.

I feel for the receptionist at the Islamic Feminist Dental Practice downstairs, I really do. Having a wild-eyed woman burst in through the door and stand in front of you sobbing uncontrollably, whilst brandishing a tooth in a plastic sandwich bag, cannot be the best start to the day.  They are very kind, however, and glue and cement it back in, very temporarily, and then do it again three days later when the tooth re-detatches itself on the morning of the day we are to go and meet my oncologist for the first time.

My oncologist – now there’s a phrase to conjure with, a phrase to remind you that you are now officially resident in the Valley of the Shadow of Death, and that whatever shepherding services are available may or not be able to get you out of there alive – this time.

Dr K, the oncologist, turns out to be female, which on an emotional level I’m quite pleased about; after all those male surgeons I am more than ready for a woman doctor. Not only is Dr K a woman, she turns out to bear a startling resemblance to the glorious Dr Pippa Moore in the brilliant BBC4 black comedy about the NHS, ‘Getting On’, which R and I have been watching with huge enjoyment, and this is at first very disconcerting. I keep expecting Jo Brand to walk into the consulting room and start making trouble.

Dr K is probably considerably less impressed with me, as I am so psychologically and physically battered by the cancer diagnosis, the operation, the ‘you have a micro metastasis and this means CHEMO!’ news and now the tooth extravaganza, that I am constantly on the verge of tears as she begins to explain the further treatments that now await me, should I choose to undergo them.

Whilst your breast surgeon deals with physically cutting the cancerous tumour out of your body, and your further treatment plan is discussed by a committee of all the medics involved, your oncologist then initiates and manages pretty much everything else in the way of cancer treatment – in my case radiotherapy, chemotherapy (probably), and  hormonal therapy –  and so is the main point of reference once the surgery is out of the way.

These days cancer prognoses are all about 10 year survival probabilities generated from data derived from long term clinical studies under various treatment regimes, and translated into nifty little coloured bar charts via computer software. Adjuvant Online is a computer algorithm that takes in information about a specific woman’s cancer, and then produces survival estimates for her, illustrating her chance of survival and breast cancer recurrence based upon whether she chooses one set of treatments versus another. All cancer treatments come with risks, and this computer algorithm enables you to see the probable benefits you will get if you choose to take those risks. It’s all very mathematical.

 The oncologist just has to feed into the computer software your age, tumour characteristics (size, aggressiveness, hormonal status), number of lymph nodes  the cancer has spread to (if any) and, hey presto:  your own personalised set of colour-coded diagrams showing your chances of being alive, dead or recurrently diseased in ten years’ time, under different adjuvant treatment scenarios (adjuvant therapy meaning additional cancer treatment given after the primary treatment to lower the risk that the cancer will come back), as follows:

a) with no further treatment

b) with chemotherapy

c) with hormonal therapy (in my case , the oestrogen-receptor blocking drug Tamoxifen)

d) with chemotherapy AND hormonal therapy

And this is what you get (n.b. this is a random example from the internet, not my own chart):

The most striking thing about that image for me is the very low effectiveness of chemotherapy in breast cancer. In the example given, what the ‘3 out of a 100 women are alive because of therapy’ means, exactly, is that for every 100 women who undergo chemotherapy, it helps only three of them to survive: it doesn’t mean the rest are all dead, just that for only 3 women out of 100 does it make any difference to their survival – the rest of them endure its horrors, and its risks, for no result whatsoever. If they survive, it is nothing to do with the chemo.

In my case, confusingly, the probabilities are confused because the micrometastasis makes me a borderline case for 'node involvement'. The computer algorithm can only calculate for either 0 nodes involved, or 1-3 nodes involved; it doesn’t allow for micrometastases, one of which counts as somewhere greater than zero node involvement, but considerably less than 1-3. This means the oncologist has to produce predictions for both scenarios, and then take a rough figure somewhere in between, nearer to the zero outcome than the 1-3 outcome, to give me my personalised probabilities, which are as follows:

If I have no further treatment, then in 10 years’ time I have a roughly 76% chance of still being alive (although not necessarily free of disease), a 20% chance of having already died from cancer, and a 4% chance of having died of other, entirely unrelated, causes.

If I have hormonal therapy, that adds about 9% to my chances of surviving (my tumour was very highly oestrogen positive).

If I have chemotherapy, that adds about 7 or 8% to my chances of surviving.

If I have both hormonal therapy and chemotherapy, the combined effect is about 15-16%.

So if I take both the treatments on offer, 18 weeks of chemo followed by 5 years of taking the drug Tamoxifen every day, then my chances of still being alive in 10 years’ time increase from 76% to about 91 or 92%; to put it another way, the combined therapies reduce my risk of dying from cancer during the next 10 years from 1 in 4 to slightly less than 1 in 10 – it’s a significant improvement in the odds.

There are no guarantees, of course – this is all about probabilities. I imagine that there are 100 women somewhere in the world right now with the same set of age, health and disease characteristics as me, and they are all sitting with their oncologists, and looking at the pretty coloured diagram, and thinking ‘hey, I have a 92% chance of still being alive in 10 years’ time, that’s pretty good odds’.

However good the odds, it is inevitable that at least 8 of us will still die from our breast cancer within the next ten years, Tamoxifen and chemotherapy notwithstanding, (although that’s a much better number than 25, obvs).

No matter the therapy, if there’s a circulating tumour cell out there in your bloodstream with your name it, you’re still toast. 

                      

Still, the increased survival probabilities are significant, even allowing for the risks of the therapies (both of which can cause cancer themselves, amongst other things) and their potentially highly unpleasant side effects.

I’d be stupid not to do the chemo, my rational brain is telling me; but the voice of protest in my head – which has regarded chemo as the ultimate enemy for the 20 years since it killed my former husband at the age of 32 -  has turned into Amy Winehouse and is screaming ‘No! No! No!’, even as I allow the oncologist to book me in for 6 doses of FEC chemotherapy, beginning in mid-November. 

 Seriously  hoping neither of these Circulating Tumour Cells has got 'Fo' written anywhere on it....