1 the ability to make considered decisions or come to sensible conclusions
2 an opinion or conclusion
3 a misfortune or calamity viewed as a divine punishment
Being a woman of a certain age, I can’t be alone in counting Sarah from the film Labyrinth as one of my childhood heroines. Sarah, as you may recall, was a sulky teenager in a billowy blouse and a natty waistcoat, who flounced around, acting out scenes from her favourite book – The Labyrinth – until one spooky night her fantasy becomes reality and she is forced to face dangers untold and hardships unnumbered to reach the castle beyond the Goblin City and rescue her whiney little brother, Toby, from the clutches of David Bowie’s irresistible Goblin King. The combined creative forces of Henson, Lucas and Bowie, and a powerful feminist fable to boot; there is nothing about this not to love. It’s no wonder I spent a large part of the late 80’s wanting to be Sarah, by which I meant I wanted to waft around in a waistcoat having intrepid adventures and the occasional encounter with David Bowie. What I really didn’t have in mind was to find myself, 30 years later, living in the labyrinth that cancer built.
Cancer’s labyrinth looks a lot like Sarah’s labyrinth. It too is full of riddles, trickery and surprises. When I first entered I had no appreciation of how complicated it was going to be. Like any maze, it appeared simple from the outside; a straightforward and linear route from diagnosis through treatment to hopeful recovery or remission. Only once I was in it did I start to fully understand the scale of the high walls that had built around me, and the long shadows that they cast; the deep warren of unknowns and uncertainties, possibilities and probabilities that I now had to navigate.
In this labyrinth nothing is certain – you must weigh certainty against greater uncertainty to make decisions you never even imagined. In this labyrinth nothing is simple – the labyrinth seeks to trap you in the thorny and impenetrable web of facts and fictions and other people’s opinions. And in this labyrinth nothing is ‘fair’ – cancer doesn’t play by anything approximating the ‘rules’.
I am not the first person to make this journey – it is a well-trodden maze, and so there is a map, of sorts, in the form of the ‘Care Pathway’; the standardised decision tree which signposts your route through treatment. The overall direction that you follow is dictated by the characteristics of your particular cancer – its size, its spread, and its nature – and the routes that have worked for other people with cancer like yours. The more the clinicians learn about your particular disease, the clearer the route that they will recommend, and so the labyrinth is full of tests. And every test has the potential to confirm longed-for positives which position you on a shorter, surer route to recovery, or to reveal grim realities that point towards a harder and less certain road. So, you approach each one with equal parts hope, reluctance and terror, and learn to live in a constant state of high alert, readying yourself for any and every eventuality, and following the route that the Pathway recommends. But the Pathway is a high level map, not a detailed manual, so at various points along the journey it brings you to a decision point – a fork in the road where you have to use your judgement to determine the direction that your own personal journey will take.
My first test in the labyrinth was an ultrasound and a biopsy, which confirmed a small and discrete malignant mass. The pathway therefore pointed towards the simplest and preferred route out – a lumpectomy followed by radiotherapy. But the test to join that route was an MRI, and the MRI revealed a small malignant mass surrounded by a much more extensive web of pre-cancerous cells. The simple route was not going to get me out of the labyrinth, and so that door slammed shut, and I embarked on the alternative path – a mastectomy, plus or minus chemotherapy, plus or minus radiotherapy, plus or minus ‘risk-reducing’ treatment, depending on what the next stages of the journey revealed. Which is how I found myself, after a 14 day emotional rollercoaster of hopefully not having cancer, hopefully only having a little cancer, and hopefully only having a boob-full of cancer, wrangling with what has henceforth become known (to me) as the Great Nipple Debate of July 2013 – a lengthy discussion with myself about what to do with my left nipple.
When I say that the labyrinth forces you to make decisions you never even imagined, these are the kind of decisions to which I refer.
The Great Nipple Debate
To retain the nipple or not to retain the nipple, that is the question. Whether tis nobler in the breast to suffer the slings and arrows of outrageous fortune, or to take arms against a sea of potentially troublesome cells, and by opposing, end them.
Having found myself on the road marked ‘mastectomy’ and narrowed down my path to a particular type of surgery and reconstruction, the dilemma I faced was thus: in removing and reconstructing my breast it would be possible to salvage and reattach my nipple. Now, nipples were not something I’d ever considered that deeply before. They were just nipples; the very definition of ‘nice to have’ – by no means vital, but providing some unique features of both form and function. However, if we accept the basic principle that it is preferable to hold onto as many of your original body parts as you can for as long as you can, then the physical, psychological and cosmetic benefits of retaining one’s nipples are hopefully quite clear. And, trust me on this, once you have seen the selection box of silicone stick-on nipples that you could use as a substitute, you can only develop a newfound appreciation for the genuine article.
On the other hand, the risks of retaining this particular nipple were altogether more opaque. Mastectomy carries an inherent risk of recurrence, which means that even if your treatment appears successful, there is a risk that your cancer will return at some point in the future, for reasons that are not yet fully understood. Nipple-sparing mastectomy is a relatively new procedure, and the studies suggest that it doesn’t make a material difference to that risk of recurrence. But the data available was limited, so I was informed that it could slightly increase my own risk of recurrence by a small, but unknown percentage. The other features of my cancer that could further increase that risk – its true size, spread, and nature – were not yet known, and would only be confirmed after the surgery to remove it.
The question was not, therefore “would I like to keep my nipple?”, to which the obvious answer is “yes, ideally”. The question was whether I should take the door marked ‘nipple’, with all its attendant benefits and costs, accepting that it might increase my chance of facing a recurrence later down the line, or whether I should take the door marked ‘no nipple’, with all its attendant benefits and costs, accepting that I could still face a recurrence further down the line.
What would you do?
Which door would you have chosen?
What judgment have you made?
One door leads to the castle at the end of the labyrinth, and the other one leads to…BABABABOOM!…certain DEATH!
You may detect a certain lack of certainty in all this, and you would be right. ‘Cancer’ is the catch all we use to describe a multitude of individual diseases, and treating it is the ultimate exercise in Decision Theory; in making choice under uncertainty. The care pathway leads you along the route with the greatest probability of success – the actions most likely to result in recovery or remission, and these are based, at best, on stuff that has happened to other people in a similar situation, and what might theoretically happen to you. But no treatment is yet 100% successful in 100% of cases, so every probability comes with an inverse risk, that the cancer will keep growing or come back, and we can’t yet predict who that will definitely happen to, or why. Every trial and breakthrough is refining the route further, bringing us closer to successful individual pathways. For example, the MammaPrint test trial recently reported that by measuring the activity of 70 different genes it can more accurately calculate breast cancer recurrence risk, and identify the patients who will benefit from chemotherapy1. But until science can perfect those pathways, then every patient remains, to some extent, a pioneer – an explorer, plotting their own individual course based on the latest, greatest intelligence, and a unique blend of experience, values, advice and instinct.
So, when you make choices about your treatment, your body, and your lifestyle, you are never making a black and white decision with any guarantees. Instead, you are operating deep in the midst of the grey area, making choices that might maximise your odds of a recovery – taking them as close to 100% as is practically possible. But cancer is a taker, not a giver, so every single percentage point you gain in your favour comes at a price, be it infertility as a result of hormone treatment, ongoing side effects as a result of chemotherapy, or the physical and emotional cost of adjusting to a body that you don’t recognise.
Clearly, any choice that you get to make which cancer hasn’t already made for you is a choice you are immensely grateful for. The fact we are tinkering around with the fate of my nipple at all is thanks to the miracles of modern medicine, and the fact that I am a woman making an independent and informed choice about the fate of my own body is thanks to the onwards march of equality. But the privilege of having the choice doesn’t necessarily make the choosing any easier. These are your decisions to take, they will be your consequences to live with, and that is a heavy weight of responsibility to bear. And, however positive the outlook, or favourable the odds, there is always some possibility that your cancer could still return; that you will find yourself on the wrong side of the mathematical line. When I say that the labyrinth doesn’t always play by the rules, this is the kind of treachery to which I refer.
With caution judge of probability. Things deemed unlikely, e’en impossible, experience oft hath proved to be true. – Shakespeare
Knowing all that, how do you make the ‘right’ decisions? Do you follow your heart or your head? Is it better to err completely on the side of caution; to reduce your risk at any cost, even if the price is much higher than you necessarily need to pay, or is it better to put faith in the positive, to take a riskier route with fewer tolls, on the basis that in all probability that will be enough. Or, as Nora Ephron puts it so much more eloquently in her essay ‘Considering the Alternative’: “Do you live every day as if it’s your last, or do you save money on the chance you’ll live another twenty more years? Is life too short, or is it going to be too long? Do you work as hard as you can, or do you slow down to smell the roses? And where do carbohydrates fit into all of this? Are we really going to have to spend our last years avoiding bread, especially now that bread in America is so unbelievably delicious?”.
Opinions (Or, food fascism and my part in its downfall)
I am very serious about this question of bread. In fact, I am very serious about food altogether, being as it is, one of the greatest pleasures that life has bestowed; a pleasure which people – random people, people I don’t know – seem determined to destroy. It’s a standing joke that if you avoided everything that the media says might give you cancer you wouldn’t be able to eat or drink anything at all. For an actual cancer patient that joke isn’t funny anymore, because the lifestyle strategies that were hitherto working quite well for you can no longer necessarily be trusted – the complete works of Jamie Oliver, midweek sobriety and a gym membership have failed, quite spectacularly, to keep you healthy. You are frightened, and fear makes you vulnerable, and vulnerability makes you impressionable because you will consider anything – ANYTHING – to get out of this nightmare and never find yourself back here. So when you are told, authoritatively, by a fresh-faced culinary ‘expert’ that dairy and carbs are a sure-fire shortcut to premature death, but ceremonially squeezing the water out of soaked almonds and creating fake pasta strands out of courgettes is your route to anti-oxidant nirvana, then hell, yeah! I would like to board that bandwagon! Which dumbass with a deathwish isn’t rushing straight to Lakeland for a straining bag and a spiralizer?!
I’m not going to repeat here all the things I’ve read that allegedly increase my cancer risk, but suffice to say it includes every major food and beverage group, including water. I used to take all this with a pinch of (actual) salt, picking and choosing my food fads according to how I was feeling at the time. Now even the most trivial decisions have taken on a renewed gravity, if not of the “life or death” variety, then at least of the “health or illness” kind. Because what if whatever this ‘expert’ is saying is right? What if milk IS going to make the difference between having cancer and not having cancer? Could spaghetti really be the source of all my troubles? And don’t even think about a lifetime of occasional bacon butties. Bread! Butter!! BACON?!!! I might just as well have plastered a big sign on my forehead saying “Cancer, come and get me. I deserve it!”.
The sheer weight and complexity of conflicting opinion is beyond perplexing – it can be paralysing, and before you know it you haven’t eaten any dinner at all. Last week I decided to make my life easy by ordering a takeaway pizza. Except it couldn’t have made my life more complicated because 30 minutes later I was still staring at the menu wondering whether the toppings I really fancied were also toppings that would also give me cancer. In the end I had to consult the WHO guidelines on carcinogenic foodstuffs to make a decision. I had to consult the World Health Organisation website to choose the topping on my pizza. When I say that the labyrinth can trap you in the thorny and impenetrable web of facts and fictions and other people’s opinion, this is the kind of thorny and impenetrable web to which I refer.
“Everything you see I owe to spaghetti” – Sophia Loren
Don’t get me wrong, I’m in no doubt that lifestyle plays a crucial role in cancer, and I’m the last person who needs to be convinced of its role in healing and good health. What I am wary of is opinion masquerading as fact, and experience presented as expertise, because ‘the truth about cancer’ is almost never as simple as the headlines would have me believe. Yes, I could give up dairy, but the evidence is inconclusive – it may even be protective2 – and I need a rich source of calcium to protect my treatment-weakened bones. Yes, I could eat rare mushrooms for immunity, but they might reduce the efficacy of my chemotherapy. And yes, I could (unsuccessfully) seek to exist on a diet of vegetable soup, but cancer has already deprived me of quite a lot already so I’m not just going to needlessly give it more stuff for free. I want clear and compelling evidence that I’m getting something for my dietary dollars, because I personally struggle to see the joy in a life without any of the ‘style’; without a guilt-free gelato in the summer sunshine, a glass of fine fizz to celebrate a special occasion, and Sunday mornings lounging luxuriously on the sofa with coffee, toast, and lashings of butter and marmalade.
So, when it comes to questions of lifestyle, I choose data and studies and good, old fashioned empiricism. Science and logic are the stars by which I find my way in the darkness. If my specialist doctors recommend it, I do it. If my expert nutritionist endorses it, I embrace it. If the trials demonstrate it, I believe it. And if you tell me it will help to stand on my head sucking eggs and singing the hokey cokey then I will gladly give it a go; just show me the data. If you can’t then thank you, I hear what you’re saying, my mind is open, but my jury is still out.
What did you decide to do with my nipple by the way? I know, it’s a very personal question, so I’ll err on the side of modesty (for once) and keep what I did strictly between me and my trusted advisers. In many ways it doesn’t really matter what I decided to do, though it was very important to me. What matters is that it’s what I decided to do. It is just one of several sobering dilemmas I have agonised over, and in each case they have been my decisions to make, and they are my enduring consequences to live with.
Cancer’s labyrinth is a tough test – of strength, character, confidence, faith and, frequently, of judgment. It presents us with difficult questions, demands a high price for our passage, and offers no guarantees in return. There are no ‘right’ or ‘wrong’ answers to those questions, there are just decisions. And whatever decisions we make, whether the odds are stacked against us or in our favour, we have no way of knowing if, when or where calamity might strike.
I live in this labyrinth, and it can be a cold and confusing place. Tomorrow I will have to journey onwards through the next challenge. Tonight, though, I will sleep easy, wrapped warm and cosy in the peace of mind that I have made the best choices for me, based on my best insights and instincts at the time. My dreams will be sweet because my decisions don’t haunt me, and that, I have learnt, is a triumph in itself.
For my will is as strong as yours, and my kingdom as great. You have no power over me! – Sarah, Labyrinth