See the link for my daughter’s article which is concerned with two of my major blog themes.
Follow the link to an article I was asked to write for an Australian online publication: my somewhat sideways “take” for Breast Cancer Awareness month.
Sounds unlikely? Read on —
This Autumn – a full two years and more since breast cancer treatment – has been assessment time for me. For the last six weeks or so, I have been off both my injections and my pills in order that my natural hormonal status can be checked. Having had the second of two blood tests today, I await the outcome, and if I have gone through the menopause, then I am done with the monthly injections which have made me post-menopausal. This would be good.
Today I also had a bone scan to check the effect of these medications. I feel so well, and am more active than I have been for years, but as Zoladex (the jabs) and Arimidex (the pills) both carry a risk of reducing bone density above what would normally be expected at my time of life, I shouldn’t really have been too surprised at the findings. My hips have lost 6% of their density – which is just OK – just in the normal range apparently. But I have lost a centimetre in height in two years, and my spine has lost 13% of its bone density. Which means I have osteoporosis.
I have tried. The gym, walking, swimming, good eating (mostly). But I have a small frame which puts me at greater risk (all my big-boned, well-padded friends out there – rejoice for yourselves). And swimming is good for you but doesn’t count as weight bearing. Cycling doesn’t count either. Damn. Better start dancing.
The advice is to take care with lifting. Avoid falls, so no going up ladders. The scanning person (don’t know the term but she was very nice) even said not to go out if it was icy! Shit, housebound in bad weather at 56??! The accompanying booklet I have been given suggests that even small movements (like lifting a shopping bag) or small bumps could cause a fracture. That’s not cheerful reading.
And then of course the medics will recommend more medication (I have to see my GP in two weeks’ time): alendronate, which by all accounts messes with your gut; and calcium tablets which just may be associated with a higher risk of heart disease. That’s why I have avoided them so far and just eaten my kale and my almonds.
So I have more difficult choices ahead. Shall I just not go back on Arimidex, which keeps me oestrogen-free (so reducing the risk of recurrent breast cancer), but thereby increases my bone loss? Shall I just up my calcium intake through food – I would have to eat more dairy products with their possible association with breast cancer – and refuse the tablets?
The pity of it is that maybe all these mental and emotional gymnastics could have been avoided, not to mention the current fragility of my bones. It feels as if one thing leads to another once the medics get hold of you. It makes it hard to be grateful, and I should be so grateful for all this care and medication which is free at the point of delivery. God bless and preserve the NHS, I still say.
So – anyone considering a mammogram out there – remember: it may have long term effects, and cause you problems you never thought of. Possibly for no good reason. Though that you will never know, and living with the uncertainty is hard. Sometimes very hard.
I don’t usually see daytime TV, but it was on at the gym when I was there this morning, and I caught some of the ITV “Breastmates” campaign (= team up with friends and remind each other to do breast checks). I was dismayed.
Of course we should do self-examinations – can’t argue with that. But this is a facile campaign. Firstly, I take issue with the silly visual images they kept showing of anything that is round and can come in pairs – melons, towel hooks, cupcakes – superimposed cheekily (as the programme makers think) on womens’ bodies.
Breast cancer is not a joke. Breasts are not objects of fun for public consumption. I can’t tell you how insensitive and inappropriate this succession of images seems to me, as a women who has had a mastectomy. Why don’t they show a woman with just one melon or cupcake? Or with a slashed or lopsided melon/cupcake on one or both sides? Because it would be less fun and look less good, that’s why. Because it would remind everybody what treatment for breast cancer (even early breast cancer, remember) actually entails.
More importantly, I take issue with the oversimplified message being conveyed. It may seem logical, but to say that finding and treating breast cancer early is always the best course of action is simply not true. It is way, way more complicated than that —-
In breast cancer awareness month, too many people are clicking on my post of Oct 2013 about “No Bra Day” , hoping (I assume) to see something salacious (but – ha! – I have made the picture very small). Instead, I urge readers to go to the link below for an inspirational article about a surgeon in the States who is prepared to think a bit differently (and rigorously) about breast cancer. I was at the hospital again this week and had to explain myself and my position on mammography to a new doctor. He should read this.
— So the Breast Care Unit has clearly not forgotten me, and I am due back for a monitoring appointment next week. I am happy to go, as I want to discuss my medication, but I will again be declining a mammogram which will give me no useful information. Any mammogram is only a snapshot which tells you if there is/isn’t a small lump on the day of the x-ray. It could be different next month. So it’s false reassurance if your result is clear, and quite possibly unnecessary anxiety (and tests, and diagnosis, and treatment) if it isn’t.
To my horror and wry amusement, I have also just been invited for a routine mammogram! I’m pretty sure the NHS has my number, and the computers should have computed –. However, the “invitation” (invidious word) has given me the opportunity to fire off a salvo to the local Clinical Director, which I reproduce here, in part:
Dear Dr L
NHS Breast Screening
I have today received a letter inviting me to a routine breast screening appointment. I have turned it down for the following reasons:
1) I last had a routine mammogram exactly 20 months ago, when I lived only 10 miles away from my present address, but in North Yorkshire. Therefore this invitation is very premature.
2) That mammogram found asymptomatic cancer in my right breast, and as a consequence I had a mastectomy in August 2013. I am still being monitored by the Breast Care Unit, so this invitation to routine mammography is at best inappropriate, and at worst, insensitive and distressing.
I recognise that my invitation is almost certainly due to an administrative error. However, I would have declined it whenever it came, because, following my experience of Summer 2013, I have decided never to have another routine mammogram. At that time, I unwittingly – and without being able to give adequately informed consent – was caught up in a process of testing, diagnosis and treatment, the consequences of which will stay with me for the rest of my life. I only learned after diagnosis, from extensive research and reading, that mammograms are best at picking up the cancers that are least likely to be life-threatening. I will never know if I really needed my surgery. That is hard to live with.
The current breast screening information leaflet, which came out just after my diagnosis, is certainly an improvement on the version I received. Yet my accompanying letter still states that breast screening “saves lives”. This assertion is based on very scant evidence. Screening is far more likely to turn a woman into a cancer patient unnecessarily than to save her life. Making such a claim in the opening sentence of the letter gives it an unwarranted prominence. I would like to see the letter revised to omit this statement.
I would like to ask you to make another change your offer of screening. While it is couched as an “offer”, it in fact feels more like a summons, because a specific appointment has already been made. By way of comparison, women have to contact their GP’s surgery for themselves in order to take up the offer of cervical screening. This is in my view a far less coercive approach, and one which I would urge you to consider if you truly want women to make a considered choice about the offer of screening.
Today, I also received a link to an article which yet again throws doubt on the value of screening programmes. The link is here: http://ije.oxfordjournals.org/content/early/2015/01/14/ije.dyu140.full.
If you don’t want to read it all (and it is a challenge), here are the main conclusions:
Among currently available screening tests for diseases where death is a common outcome, reductions in disease-specific mortality are uncommon and reductions in all-cause mortality are very rare or non-existent. In other words, it is misleading to tell women that screening save lives.
There are a now a number of articles floating around in cyberspace about “Misfearing Breast Cancer” – just Google it. I tend to agree with these. When you get a breast cancer diagnosis, all the well-meaning websites and support networks tell you that you will be devastated. You are encouraged to be afraid, though also told that most breast cancers are treatable these days. I think we should be less afraid. We’re not so afraid of diabetes, it seems to me – another potentially serious but manageable condition. If we’re going to be afraid, what should we women in our fifties (and beyond) be afraid of? The answer, apparently (and sorry I can’t find a reference just now) is heart disease, which will kill far more of us than breast cancer ever will; and, especially in our final years, muscular-skeletal problems (this one is according to Atul Gawande’s book, “Being Mortal”).
I am under no illusion that I am anything but mortal. It won’t save my life – I won’t live for ever – but in an attempt to look after my heart and my bones, today I joined a gym, but chose not to misfear breast cancer.
My blog doesn’t get many hits most of the time any more. So normally I’m delighted when my viewing rates show a spike. There’s been a bit more unsolicited interest in the last few days, and from further afield than usual, and I wondered why for just a little while. And then I realised that of course it’s October again – so-called Breast Cancer Awareness Month, and that the hits I’m getting on my blog are nearly all on my post (written a year ago now) about the senselessness and insensitivity of No Bra Day.
I don’t feel it all as acutely as last year, but it’s a bit crap, isn’t it? I mean, I’m very glad if someone gets the message that NBD is a bad idea because of what I wrote. But I’m not glad that, whatever else I write about – rivers, memory, poems, music, ageing, cancer, overdiagnosis, getting better – it’s the post about the bras and the boobs that gets the hits.
So, if you’re visiting here because of that post, here’s a challenge. Up your game, and instead of doing something stupid and pointless in the name of Breast Cancer Awareness, read something serious.
Here are a couple of blogs on WordPress which will help. Try Positive3negative, or Evenstarsexplode. Or you could even read more right here. It might raise your awareness.
Above is the link about the conference referred to in my last post.
And below is the text of what I said to the research planning meeting on “Communicating about Overdiagnosis”.
I am a survivor of the UK Breast Screening Programme. I do know something qualitative educational research, but I’m not a medic nor a statistician. I have learned the hard way about overdiagnosis and breast cancer in the last year, but as I am not au fait with all the latest research, I will address just the first two questions on today’s brief, and add one crazy idea about how I would spend my ten million dollars on research.
In June 2013, following a screening mammogram, I was diagnosed with a small invasive ductal carcinoma. Somehow I had completely missed the debate in the media about overdiagnosis.
Three days later, I typed the naïve question into Google, “Does breast cancer ever go away on its own?”. I was immediately swamped by a deluge of information about overdiagnosis, which I read with a mounting sense of shock and outrage.
After several weeks of prevaricating, and under pressures that you will understand, I did eventually agree to a mastectomy. (by that time, the cancer, though low-grade, had been found to be multi-focal). You will also understand the “decisional conflict” I felt, and continue to feel, since I know – and indeed knew when I made that difficult choice – that mammograms are best at picking up small, slow-growing cancers, not the life-threatening ones. It is quite possible that I am one of the overdiagnosed, but I will never know.
It is because I did not have the information I needed when I needed it that communicating overdiagnosis is relevant to me. I do not want any one else unwittingly to end up as a cancer patient, to have imposed upon them similar agonising decisions, or to feel so duped.
When I myself have tried to communicate about overdiagnosis, I have been met mostly with incomprehension. It is a difficult topic, at odds with the popular perceptions that all breast cancer needs radical treatment, and that catching it early saves lives. Communicating overdiagnosis also involves statistics which most people – including me (and more worryingly, many medics it seems) don’t fully understand. In brief forays into cancer charity chatrooms, I also met veiled hostility: “Count yourself lucky they got it early”, they said. And condescension. “Only look at the information on the cancer charity websites”, they said. My consultant told me I was making things very complex and advised me not to think. So my communication attempts haven’t really had a great reception.
To me, though, the key challenge in communicating overdiagnosis is negotiating the associated ethical issues. I couldn’t get an answer out of the Breast Screening Programme when I emailed (twice) to ask about the ethics of sending me – without any qualification – an information leaflet which had been deemed to be unfit fro purpose. (I got the pre-September 2013 version, which was then under revision. It included one solitary sentence about the risk of being treated for a condition that might never cause any harm.)
But I know I may not be typical. What do people want to know? Knowledge can be uncomfortable and distressing. I found I wanted to protect other women with me in the breast cancer ward from what I knew – because it was too late for us all, by then. So there are ethical challenges in relation to communication: what information to give, when, and to whom. Even raising the issue of overdiagnosis (before any screening or intervention is discussed) releases the genie of uncertainty from the bottle, and presents women with choices that maybe they would rather not have. One criticism of the Swiss Medical Board’s report of Feb 2014 was that the evidence was unsettling to women, to which the response was, “but we wonder how to avoid unsettling women, given the available evidence”. Too right. I think it’s difficult even to involve women in a research focus group without imposing information upon them. How can they know if they want to know something they don’t know already?
Research if I had $10 million
My ten million dollars would be spent on researching how to communicate at a very early stage: that is. trialling ways of helping healthy individuals to understand their own attitudes to risk in relation to their health. This might involve research into the effectiveness of profiling exercises and conversations devised to gauge how much personal responsibilty and control the individual wishes to accept. In my own case, for example, my choices in childbirth were for minimal intervention. I limited and delayed the vaccination of my daughters. I read extensively about both topics. So, with an impartial “Health Counsellor” reviewing these choices with me, I might have concluded that a) I like to be fully informed b) I prefer to keep medical intervention to a minimum and c) I am prepared to accept the associated risks.
In association with such a project, other research would focus on developing communication approaches which neither withhold information nor impose more than is wanted. Perhaps along the lines of those “Choose your Own Adventure” novels, where there is a choice of routes for the reader (“If the character made Choice A , go to p.53”, “If he made choice B, go to page 59,” etc.).The Cancer Research UK website does this quite well, signposting clearly what is coming up on the page, and including links for skipping pages, thereby reducing the likelihood of a reader unexpectedly confronting unwelcome information.
In a parallel fantasy universe, this was all trialled and then rolled out in time for me. So back in Spring 2013, my Health Counsellor and I agreed that I probably wanted a lot of information about my choices, which she skilfully directed me to, guided by the kinds of questions I was asking. I decided against mammography. I felt informed, not fooled. I developed no symptoms.
Or – maybe I did develop symptoms some time later. So I went immediately to the doctor to discuss the help I knew I needed – my trust in the medical profession undiminished.
It is a universe I would love to have inhabited.
I’m in Coach E on a Virgin train, somewhere in Middle England, on my way home. Nearly everybody (including the five-year-old opposite ) is, like me, plugged into an electronic device. Many are in virtual contact with – who (or should that be “whom”)? Business partners? Families? Or are they following Facebook friends, or the rich and famous on Twitter? I wonder what the global reach from Coach E is.
It’s so easy to be “in touch” and to be sharing our worlds and experiences through the ether (blogging being another example). But to me, real meetings – even fleeting ones – are still important. I’m not sure if celebrity-stalking counts, though our girls still recall the thrill of meeting David Tennant at the stage door in Stratford.
My real meetings of the past day or two would not, in fact, have happened without the internet, as they started with the e-contacts I was able to make with the big hitters in the world of Preventing Overdiagnosis. And in truth, my meetings at the research planning meeting of the same name were mostly brief. But it was very affirming to be in the same room as so many people who are making my concerns their life’s work. It was gratifying to be welcomed by them, to find that (bar some of the statistics), I could follow a good deal of the discussion in an unfamiliar domain and context, and to feel that my contribution was valued.
I really took to this company of researchers and medics. At the risk of blatantly perpetuating national stereotypes, why is it that the Scandinavians (who were well represented, not to say dominant) are so likeable? Is it their perfect, ever-so-slightly accented English that’s so admirable, or their apparent ease with themselves, or their egalitarianism? This is not to discount the friendliness and directness of the Canadians and Americans and Australians (oh, and the British –).
Common to all was a huge fund of knowledge, and – mostly – also a humility and willingness to consider other points of view. I do suspect Peter Goetzsche of zealotry (but I will let him off, because I agree with him). I wanted to shake his hand and say thank you – he was one of the first, I think, to dig out good evidence on the dubious benefits of screening mammography. It is curious, that, though the knowledge is painful because it came too late for me, I am still glad to know it, and to know that these people are working to find out more.
They may not be celebrity medics in the way that the Embarrassing Bodies doctors are (and the dress code was more sweat shirts than tight shirts and pencil skirts). But you – Peter Goetzche, Per Hendrik Zahl, John Brodersen, Alex Barrett, Kirsten McCaffery, Hazel Thornton, and those others I met for the first time too – you are my celebrities. I am glad to have met you for real. I’m a fan.
Today it became clear that I am not entirely over it. I don’t need to talk about it all the time; neither do I mind at all talking about it when it’s appropriate. But if I feel MISUNDERSTOOD on the subject, or MANIPULATED, my cage rattles, and then I rant. (Using capital letters like this is, I think, a bit childish – but, remember, the Blog is the place where I sound off, and in the upper case if I need to).
I have written before about my reactions to people who try to get too close (see “Intrusions and Hostilities”, October 2013). In the last few days, I have had two encounters, one of which – the cloying, getting-too-close one – has left me seething. I will deal with that one first. Let’s call the person concerned A. Like all the people in this story, I do not know her very well. She’s not exactly a friend (and now she probably never will become one.)
A prefaced what followed by saying that she had been looking forward to having a proper conversation with me, and that a third person (B) had told her I had had some health issues (I know B has read at least some of the Blog). A did not say, “How are you?”. She did not say, “Are you OK talking about this today?”. She did not consider my perspective at all. She did not ask ONE question. Instead, I was subjected to a long – and I mean long – story about her own and her family’s history in relation to breast cancer. Incidentally, she hasn’t got it, so I am not inclined to make allowances for the distress and self-obsession of the diagnosed or the ill.
I am INCENSED by the fact that she clearly had not bothered before – and did not bother during our encounter – to find out anything about my experience – she just assumed that we shared common ground. She had NO IDEA about what I have learnt, the dilemmas I have faced, or my peculiar pain – otherwise she could not have spoken as she did. By about her third sentence I was wanting to interject and say, “Hang on a minute, this is not how it has been for me –“. But there was no space for me to do so.
She set up a kind of intimacy based on a false premise (We Women Have Shared This Difficult Experience). I HATE fake intimacy. It makes me feel manipulated. And then – and THEN! – perhaps based on this fake – she shifted topics and went on to tell me that another person (whom we both know, let’s call this person C) had done some horrible things to her. She doesn’t know how friendly I might be with C; again she ASSUMED that I would share her view.
No way, no way, A, even though you claim the moral high ground for your perspective. As soon as it became clear that we weren’t really going to have a conversation, that you hadn’t done your research and that you were intent on telling me your own story oblivious to the possibility that it might cause distress, you lost me. Round about your third sentence.
Because I am basically nice, you will note that I have tried to protect A’s identity. Not that there’s much danger of her reading this, since she’s not interested enough. By contrast, a few days ago, I had an email from E, who clearly had read my blog in some detail, engaged with it, and told me what it had meant to her. She even had the common decency to wish me well! She is much more likely to read this post than A.
So, dear E – your empathetic, witty, and unsentimental response was just what makes me feel UNDERSTOOD. That’s what I need. Thank you. That’s friendship. And it isn’t fake.