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.

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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.

Breast cancer screening – yet more

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 —

Even stars explode

Advice on breast screening – from the Australian Breast Cancer Network:

http://www.abc.net.au/health/features/stories/2014/03/14/3962769.htm

and

‘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.

http://www.bbc.co.uk/news/health-26681311

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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…

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Cochrane decision aids for people facing health treatment or screening decisions

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).

Even stars explode

Updated review published today on The Cochrane Library: Decision aids for people facing health treatment or screening decisions

http://bit.ly/LhRFop

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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Windmills of my mind

windmills

Like a tunnel that you follow
To a tunnel of its own
Down a hollow to a cavern
Where the sun has never shone,
Like a door that keeps revolving
In a half forgotten dream,
Or the ripples from a pebble
Someone tosses in a stream

The picture for this post was nearly a hamster on a wheel, and that might actually be more appropriate. But as I was out for a walk this morning, I remembered this song, and looked up the lyrics when I came home. Wikipedia also tells me that the composer was French and the French lyrics are entitled, beautifully, “Les moulins de mon coeur”. I’m not quite pretentious enough to put up a French title (though it was a close-run thing).

I really wanted to post a tranquil rural windmill picture. But I had to choose an image which conveyed something harsher, grinding, maybe with grating mechanical noises. Because what goes round and round in my mind is:

I want an apology. I want an apology. I want an apology. I want an apology. I want an apology ——-

I have written twice to the NHS Breast Screening programme telling my story, and asking if they think it was ethical to send me (without any warning or caveats) an information leaflet which they knew was not fit for purpose while they were working on the new one. They have replied (but namelessly, no signature or name on the end of the email), explaining how complex it is to produce a new accessible leaflet and check the information. They haven’t responded to the bit about ethics.

They are right – it is very complicated to work out what is good information. But can they not say SORRY?

B thinks they probably can’t; because saying sorry would be to admit some liability or responsibility (although I have told them I would never sue). In any case, if you are director of the screening programme – or even if you are an employee whose job it is to answer the emails sent in by angry women – you probably believe that the screening programme does more good than harm. At least I hope you do, otherwise the job must be soul-destroying.

I can tell them what I want them to say.

SORRY that we caught you at the wrong time, and that you had to be one of the last women to receive that old leaflet.

SORRY that as a result of screening, you are experiencing such ongoing distress.

SORRY that the screening programme turned you into a cancer patient, when there was far more chance that you did not need to be one than that the cancer we found would kill you.

SORRY that you had to take such an impossible decision about whether to accept treatment or not. And that you are having such difficulty living with that decision.

SORRY that the suggestion (on the leaflet you received) that early diagnosis might help you to avoid a mastectomy was not true.

But most of all, SORRY that you feel you have been fooled. That we put you in a position where you could not make an informed choice about whether to go for screening or not.

So that you could have avoided all of the above.

Today I have decided that I will never, never go for a monitoring or screening mammogram again. I want my surgeon to examine me, and I will examine myself. If either of us is concerned by symptoms which actually present, I will go for diagnostic mammograms, u/s, biopsies – the lot, of course. But I never again want anyone to go looking for “inconsequential disease” (see, they even have a term for it).

Of course the disease might have consequences. But what the figures tell me is that if we catch a cancer – the boring kind I’ve had – a little bit later, almost certainly, these days, it can be treated. That’s the type I’m most likely to get if I get any more. And it’s the type that the screening programme is most likely to pick up! No thanks.

There’s a very, very small chance, of course, that screening might pick up an aggressive, hard-to-treat cancer. But you see, at the moment, I’m actually feeling I would trade in a few years of my life not to re-visit the tortured dilemma I have faced this year.

That’s what the screening programme has done to me.