Gloss

(13 Feb)

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.

(18 Feb)

And this was screened in Australia this morning – includes a very small contribution from me! Click on this link:

http://www.abc.net.au/7.30/content/2015/s4182745.htm

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.

Preventing Overdiagnosis

http://www.preventingoverdiagnosis.net/

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”.

Personal relevance

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.

Challenges

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.

Fan Mail

images

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.

Rattling My Cage

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.

Milestone

images

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.

Image

First Swim

First Swim

This is our river, in which yesterday – after several days of lovely warm weather – we took our inaugural dip in the company of some of our neighbours. A yurt (which makes a good changing room) has been pitched for the summer conveniently near a good getting-in spot. The water was cool – this is after all North West England – but not as bad as I expected. I made it all the way in and swam around a bit, getting out quite quickly not because I was cold, but because I was uncertain of the depth. B. made it right across the river and back again. What a wonderful facility to have on your doorstep.

It was also my first swim since surgery. I have not bothered with a specially adapted swimming costume. We were only a small group, but I just went for it. I have no idea whether my neighbours noticed my lack of symmetry or not. I felt OK. In some ways this was a warm-up for many more swims to come this summer, some probably in the company of strangers and probably with more on show (or less, on the right side!).

The anniversaries have come around. I have had a cancer diagnosis for a year now, and its low-level effects rumble on. I got some eye-watering quotations when I tried to buy travel insurance, but finally was able to go with our regular insurer, who sensibly agreed to insure us against most contingencies, but not breast cancer. With the summer weather and summer parties, I also notice the constraints on my wardrobe, even though I’ve never been one for plunging necklines. And (this may be too much information) I have discovered that a prosthesis is damned uncomfortable when it’s hot: heavy and sticky. Think wearing a plastic bag full of dough.

Because it’s anniversary time, I have also had a call-back to see the consultant, although, with her holidays and mine, we can’t seem to make a date for a couple of months. This was much to the discomfort of the poor clinic booking secretary, who I think is trying to hit some targets. I could myself go for an appointment any time soon – but I need B. to go with me, to help me say what I want to say, and not to succumb to the pressure to have a mammogram. Which I will not be having. And if I am told it’s better to be safe than sorry, I plan to reply that my perception of risk has turned out to be different from that of the advocates of screening – or even monitoring, which is what they will say the mammogram is at this point. I would rather risk missing something really nasty (and finding that out a bit later, when having treatment would be a no-brainer, but the prognosis highly likely to be no worse), than risk the psychological torture of finding another small asymptomatic (and maybe harmless) lump, and having to decide whether to treat it or not. I went there last year, all unknowing at the start. I’m not going there again.

It’s a pity that for the next few years (if I stay with the programme), I will have to revisit the cancer thing in July and August. Why couldn’t it have been February?! I don’t think I’m an ostrich: but, in the interests of more happy river swims and weeks camping in France, as far as mammograms and their findings are concerned, I’ll settle for ignorance. As near to blissful as I can get.

Image

— so I have been invited to meet with the great and the good! There’s an international conference entitled “Preventing Overdiagnosis” in September. It was held in the States last year, and I was well aware of it, but not in a position to go for multiple reasons. This year it’s in Oxford – a bit easier to get to. After the conference, there’s a day and half of research planning meetings, and I have been asked to contribute to the one on “communicating about overdiagnosis”.

I am very pleased. I presume this has come about because of my correspondence with three or four of the key players, and my submission to the Select Committee. The invitation was addressed to “Dear Doctor Dawson” (I quickly disillusioned the writer), but it appears that they actually do want my lay/patient/survivor perspective.

Don’t know what will emerge – if anything. Strange how my work and learning for my MA – in a different field – now may inform and support this venture. At least I have a bit of an idea of what research might look like. And certainly my personal experiences are informing my MA project. Issues such as ethics, informed consent, power relationships – they are what really float my boat.

And the pictorial reference? I thought it was obvious, but when I showed it to B, I realised there were multiple interpretations. Choose your favourite.

a) Up sh** creek
b) Putting your oar in
c) Paddling your own canoe

and yes I know the picture is hopelessly optimistic on several counts —

Screening does not prevent aggressive breast cancer

The evidence just keeps growing —

Even stars explode

Breast screening was thought to detect cancer before it had spread, but a new Danish study of Norwegian women’s screening results shows that breast screening does not detect those aggressive killer cancers early enough. Screening detects mainly ‘dormant’ cancers that are slow growing and usually not fatal, and many of them would never become a problem in a lifetime (overdiagnosis/overtreatment).

“The objective of breast screening is to prevent the aggressive and deadly types of cancer, but our study shows that the screening only has a minimal effect on the number of women who develop aggressive breast cancer,” says Henrik Støvring, an associate professor at the Department of Public Health at Aarhus University, Denmark, and lead author of the new study, published in the European Journal of Public Health. Eur J Public Health (2014) doi: 10.1093/eurpub/cku015 First published online: March 4, 2014.

‘If the screening had a preventive effect and caught…

View original post 63 more words

Commons Select Committee on NHS Health Screening

Since I last posted, we have moved house. We are still coming round from the upheaval, and are busy helping B’s parents to move, too! But the little house and the large office are shaping up; I cooked apple crumble for 50 yesterday, and B is digging on a land party on Sunday (we have benefited from other people’s gardening and cooking as well). As I said before, busy is good, and though I had to be efficient about re-registering with the local surgery in order to maintain continuity in my medication, I haven’t given breast cancer much thought recently. But before the rush started, I sent a submission to this Select Committee. This is now published along with other submissions, here (scroll down the page, noting the choice of a cute picture of a prenatal scan – not a needle, a speculum, or a mammography machine):

http://www.parliament.uk/business/committees/committees-a-z/commons-select/science-and-technology-committee/inquiries/parliament-2010/national-health-screening/?type=Written#pnlPublicationFilter

I have not read all the submissions in detail, but here is what I have gleaned so far re breast cancer screening.

The Royal College of Physicians and  the radiologists (who both put in very slight submissions), support the screening programme. So do two cancer charities (odd –  what’s their investment in it?), and Public Health England, who runs it. But this is the view of all the other individuals and groups who wrote to the Inquiry, some of them in great detail:

The breast cancer screening programme is rubbish. It is not carried out ethically: it does harm and no good; it does not save lives; it costs a lot of money.

I wonder what happens next.