See the link for my daughter’s article which is concerned with two of my major blog themes.
Today I got the feedback on my MA dissertation, which I submitted three weeks ago, and spent a good part of the early summer writing (it was torture). My tutor kindly headed her email as “Excellent dissertation”, so I knew it was OK from the off, and I made myself read the feedback comments from both markers before I turned to the mark (because we value feedback we can learn from more than we value marks, don’t we?).
Well, the feedback was very positive, encouraging and made suggestions as to how I might develop my dissertation into published academic papers if I choose to. So I felt great about that. And then I turned to the mark. Which was 82.
82?? That’s, like, a starred first, isn’t it? Stunning (I am stunned –). And thrilled. And the truth is that the mark does matter to me. The external validation does count for something. I would be less satisfied if I had only received the written comments, even though they were so positive and constructive.
When I (or a member of the family) does well, I experience a curious tension, that I’m sure will be familiar to many reading this. I both want to tell people, and I am concerned about appearing to boast. I am proud and embarrassed. And (for myself – less so for other family members) explanations which minimise the achievement flit across my mind. Fooled them yet again, didn’t I? ‘Course I did well – I wasn’t simultaneously holding down a teaching post, unllike other MA in Education students, was I? ‘Course I did well – my tutor was one of the markers, so it was in her interests to mark my work favourably. And even – ‘course I did well, because I am married to a Prof at the uni and so the markers couldn’t really mark me down —
Time not to be so British. Let me say it to myself, loud and clear:
“Yes, you had plenty of time to give to your dissertation. And yes, you worked bloody hard, and put a huge amount of effort into it. And although you find it torture, you are a bloody good writer. And that’s because, one way or another, you have always written – sometimes easily, but sometimes with great struggle (oh, and you’ve read quite a lot of good writing, too). You did well. Very well. It’s OK to be proud!”
Although my research topic had nothing to do with it, I think also there was some passion in my dissertation which may have communicated itself to my readers, and this relates to my breast screening/diagnosis experience. The passion was about power relationships in education. Because I felt, and still feel, that the medical establishment abused its power in getting me (ill-informed) to go for screening, I tried my utmost to make sure that I was as transparent as I could be with the school I worked in, the tutors I discussed my work with, and (most of all) the vulnerable little boys who were at the centre of my project. I wanted them to understand what was going on, I wanted them to have real choices about their involvement, and I wanted their views to come across. Ethics, you see – trying to ensure that those on the weaker side of the power relationship are, at the very least, not harmed, and might even benefit.
I still think it’s a bit boastful to put this post up. But what’s the worst that can happen? Here goes.
I put on some lipstick this morning. And I put on my favourite dress (new, not a charity shop number). I have to look my best for one million Australians. There’s a crew of two here right now interviewing and filming me for the ABC’s national flagship current affairs programme. I’ll put the link to the programme up when I get it within the next fortnight or so.
And this was screened in Australia this morning – includes a very small contribution from me! Click on this link:
I am very glad the issue is getting airtime anywhere in the world; but – as if I didn’t know it already – I have learned how slippery the media is. I’m not as positive about the UK screening programme as I appear to be here. My ifs and buts have been edited out. And they have omitted the bit where I explained that I did not have access even to the information that is available to UK women now, so it looks as if I knew the risks I was running by going for screening. I didn’t.
The programme makers’ agenda was to suggest that Australia is behind the UK in terms of the screening debate. I was aware of this, so I tried to ensure that I would get to make my main point. Here is an email exchange from last week:
Me: I am sure you will film a lot more than you show, and I really do want to make sure that my central concern is communicated. This is that women need to have access to sufficient information in order to be able to make an informed choice, and without being coerced, about screening. I am still outraged about what was done to me in this regard. So whatever cuts you make, please don’t cut that bit.
ABC: That is precisely the point we want you to make in the story! So definitely in.
But they did cut it. Thank goodness for Alexandra Barrett’s closing contribution. I myself feel a bit glossed over.
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.
My consultant, my husband and I did, in the end, manage to co-ordinate our diaries for today, so it was back to the Breast Care Clinic. Nine o’clock appointment, so no waiting. We had a friendly conversation around my general state of health – and then around my polite but firm refusal to have a mammogram. You know why.*
The consultant did try to persuade me into the mammogram from several angles, but – and I’m so delighted by this – without patronising me. Backed up by B., I had my arguments ready. I gave her a copy of my submission to the Select Committee Inquiry, about which she appeared to know nothing (?!). I think she will read it. I told her about my forthcoming date to speak at the Overdiagnosis Conference in September. She was genuinely interested – maybe even impressed – and – after we had agreed that we would meet again at least to review my medication – asked me to tell her then how it went.
If there was a low moment for me, it was that, having got her ear and (perhaps) distinguished myself by my non-compliance, she did now suggest that I could, last summer, have tried hormone therapy before surgery. This was not what she said at the time –
I signed a copy of the notes I had brought along to prompt myself and B. These will go in my file to protect this poor surgeon, should the departure from standard procedure ever come back to haunt either of us.
And so, after a quick physical examination which of course showed nothing untoward. we emerged into the sunshine. We can go on holiday without the mammogram results hanging over us. I have forfeited the (temporary) reassurance that a clear result would give me, but I have side-stepped another awful, impossible decision about treatment of an asymptomatic and possibly harmless lump.
This time I called the shots. I finally had a sense that I had won the respect of the consultant. And that I was not a pushover.
* You don’t? It’s all in my earlier posts.
Two interesting articles here. The first – from Australia – is not entirely anti-screening (see, I’m not a zealot really), but it does suggest that balanced information is what women need – yes, absolutely. The second is about suggestions of a change of approach to the UK screening programme, and I wonder if it is a political move. Realising that the pressure from the pro-screening lobby and the only partially-informed public is too great for a complete dismantling of the the NHSBSP to be acceptable, Michael Marmot suggests increasing screening for those deemed to be at risk, and -maybe – reducing it for other women.
I am cautiously positive about this. Because medics would need to explore the concept of risk with the “at-risk” women, and give more detailed information. IF they could do this in an unbiased, open way, without exerting pressure, this might be better than what we have got at the moment —
Advice on breast screening – from the Australian Breast Cancer Network:
‘Call for a change to breast cancer screening approach’ – Pippa Stevens, BBC News, 22 March 2014
A study analysed 53,467 women between 2009 and 2013 and found 14,593 women had an ‘above average’ risk of developing breast cancer. (Presumably there were another 14,593 (50%) women who are below average risk.) Professor Michael Marmot is calling for a trial.
This reference is a good one. Don’t be scared by all the stats – just scroll down to the plain English version if you can’t face grappling with them.
I now have a name for at least part of what I have been suffering from. No, not breast cancer, but: “decisional conflict related to being uninformed.”
(Sorry about the capitals, something has gone wrong with the formatting and I can’t find how to correct it).
Updated review published today on The Cochrane Library: Decision aids for people facing health treatment or screening decisions
Citation: Stacey D, Légaré F, Col NF, Bennett CL, Barry MJ, Eden KB, Holmes-Rovner M, Llewellyn-Thomas H, Lyddiatt A, Thomson R, Trevena L, Wu JHC. Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews 2014 , Issue 1 . Art. No.: CD001431. DOI: 10.1002/14651858.CD001431.pub4
Now 115 included studies, nearly 35,000 participants, showing decision aids improve people’s knowledge, help them feel more informed, participate more in decision making.
The Summary includes, ‘ Decision aids reduce the choice of prostate specific antigen (psa) testing and elective surgery when patients consider other options’.
My comment: the harms and lack of benefit of breast cancer screening have brought about calls for a fresh look at cost and effectiveness.
It seems to me that men with raised psa levels are…
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The link is above. Storing this important paper here for myself so that I can grapple with the statistics later. Cheered by the concern to work on getting precise enough information to women in order to help them take considered decisions about screening.