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.
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.
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.
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.
The evidence just keeps growing —
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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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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More on overdiagnosis and overtreatment. The link to the article by Welch is worth following for an American perspective. I am getting to know the names of the key people in the overdiagnosis field, and have been in touch with many of them. I will be writing to the Commons Select Committee.
On 17 December 2013, MPs launched an inquiry into the scientific merits of national health screening programmes and whether calls for health screening to be extended to cover conditions such as prostate cancer, lung cancer and post-natal depression are based on solid science.
Chair of the Science and Technology Committee Andrew Miller MP stated:
“The NHS spends a significant amount of money on health screening and it is important that this is underpinned by good scientific evidence.
Thousands of women are screened for breast cancer every year and lives are saved as a result but there may also be women who undergo unnecessary treatment and surgery as a result of screening. Calls to extend screening to other conditions should ensure that there is good evidence that the screening would be effective.
We will be examining the evidence base behind the decisions on which illnesses to screen for and will be…
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Further to my posts about the new NHS breast screening invitation leaflet (“Good news for women” and “Consider 1000 women”), I attach the new leaflet which is now available on the screening programme website; and the old leaflet – the one I was sent in May – by way of comparison.
<a href=”https://olot1.wordpress.com/?attachment_id=952″ rel=”attachment wp-att-952″>pre-2013 screening leaflet</a>
<a href=”https://olot1.wordpress.com/?attachment_id=951″ rel=”attachment wp-att-951″>2013 screening leaflet</a>
What a contrast. I applaud the NHS for the new leaflet, which I think leaves women in no doubt that they must weigh up the pros and cons of going for screening. Some very misleading information has been revised: for example, compare this from the old: “If a breast cancer is found early, you are less likely to have a mastectomy (your breast removed)” – with this from the new: “Whether your cancer is invasive or non-invasive, you will be offered treatment and care from a team of breast cancer specialists. The treatment is likely to include surgery (which may mean a mastectomy), hormone therapy, radiotherapy and possibly chemotherapy as well. These treatments can cause serious, long-term side effects.” Note that the new leaflet acknowledges that the standard treatment even for non-invasive cancers may be very radical.
It will be fascinating to see what happens to the uptake of screening now. It will also be interesting how much pressure is still put on women to attend A refusenik (better informed than I was) tells me that, earlier this year, when she didn’t attend, her GP invited her in for a discussion, which she declined as she doubted her ability to withstand the face-to-face pressure.
I know I am repeating myself. If you are bored, you can click the “close” button. But this blog is for me, and if I need to repeat myself, I will. If I am still banging on about this same issue in a year’s time, then do give me a nudge, as it will perhaps suggest that I am psychologically stuck. Particularly as I clearly don’t have to campaign on this one any more. However, for now, still under two months on from the the first time the word “mastectomy” was used in relation to my own case, I am just so sad that I was sent an old leaflet while the new one was actually in production. The screening programme sent me information they knew was biased and misleading, without a caveat in the covering letter. They sent it to thousands of other women too, in the period since the Independent Review reported last Autumn. I think that is seriously unethical. It landed me with an impossible dilemma – one which still haunts me.
Sometime in my forties, I started turning into an old fogey. One of the first signs of this was the attitude I found myself taking towards Hallowe’en. Or at least Hallowe’en as it is marked These Days as distinct from the Good Old. I do not have any problem with a bit of pumpkin-carving or apple-bobbing and the telling of some spooky stories. Nor is this an objection on the theological grounds that we shouldn’t dance with the devil or dabble in the dark arts. And I did try to do my bit for a couple of years, trailing round the streets at a discreet distance from small girls dressed in sheets, as they excitedly tried to extort sweets out of complete strangers. My objection comes principally from what I perceive as the over-commercialisation of a festival that would be better kept simple and home-spun. I think a certain amount of transatlantic drift has contributed to this overkill – it’s a much bigger deal that it used to be. Witness the nasty cheap plastic costumes in all the shops, the plethora of extruded potato snacks in ghost shapes, and the orange lollipops. And while as a Quaker I shouldn’t be setting great store by festivals, it also troubles me that children probably have little idea of the origins of Hallowe’en – little sense of the sacred which might make one want to pause and think about All Saints or All Souls. I know even my own daughters don’t “get” why Easter (to give another example) is, in my view, in a rather different league from Red Nose Day.*
But I digress – back to October. Now here’s another example of transatlantic drift – Breast Cancer Awareness Month.
This was started in about 1985 in the USA, to encourage women to check themselves and to go for screening. At the time, this may have been laudable. But two things have happened: firstly, the screening programmes both here and in the States are now arguably doing more harm than good (see my other posts). Secondly Breast Cancer Awareness Month has grown out of all proportion into a horrible, silly, pink month-long party, in which we are encouraged to buy things we don’t need and take part in daft competitions in the name of supporting women with breast cancer. And I bet most of those who contribute – with the best of intentions of course – think they are doing something politically correct (“let’s ensure women’s health is high on the agenda”), and are unaware of the origins of the Month, and of the controversies which surround screening.
I actually think that the influence of the breast cancer charities may be having a negative effect on women’s health. These charities are so powerful that, as Professor Michael Baum suggests, doing away with the screening programme is “politically unacceptable”. They all recommend that women go for routine screening – even now, after the publication of the new screening leaflet; though some express more caution than others. And it does honestly seem to me that the pinker the charity, the less critical it is. So it is very hard for medics and researchers to sit down and think carefully about screening from first principles in the light of current knowledge; and it is very hard for politicians to think about re-directing resources away from screening and into research and better, more targeted, individual, treatments – which is where I think the money should go. I also think it should go particularly into the care and support of those who are not the breast cancer “successes” we all like to think about. Apparently women who develop secondary breast cancers (still incurable) speak often of a sense of abandonment. According to the prevailing rhetoric, they’re the “failures” after all. Maybe they didn’t “fight” hard enough.
I am not a lone voice. I have discovered that lots of women who have had breast cancer hate Breast Cancer Awareness Month. Mercifully I am not aware that its worst excesses have reached the UK yet: in the States apparently it is in danger of becoming a festival of the boob. (“It’s all about the boobies” says the T shirt slogan). Because boobs are fun and sexy, and you don’t have to think too hard about real women and their needs and choices that way.
At my daughter’s school, where the sixth formers are still in uniform (!?), they are allowed to buy and wear a pink tie in October. My daughter won’t be wearing one. And if she’s asked why, she’ll have to explain. It’s because that Old Fogey, her mother, has had breast cancer.
*They say they do. Sorry, girls.