Saving Lives?

— 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.

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Milestone

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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.

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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.

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— 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 —

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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