Milestone

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.

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.

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

View original post

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.

Intimations of Mortality

One or two of you have noticed that the blogging is less frequent, but today is my birthday, so maybe it’s time for a progress report. And on the subject of getting older, I felt a little frisson when I filled in an online survey and realised that I have crossed the divide into the next age group. No longer 46-54, but 55-64 —

It’s been a busy birthday. The celebrating will have to come later: we are moving to LCH in about a fortnight; so we are frenetically decorating, getting carpets fitted, starting to move chattels over, chucking out, tidying — and there’s plenty more to do! Busy is good. The preoccupation with the breast cancer experience is just starting to take its place alongside my other preoccupations, rather than being overwhelming. I do return to it; in fact I have just submitted 3000 words to the Commons Select Committee Inquiry into cancer screening (I would post my submission on the blog, but it seems I’m not allowed to).  But I have also resumed my MA studies, and today spent a happy morning in the school in which I hope to develop my project. I am tentatively working with B. and a few others on developing an INSET package for schools. So I may not be earning anything, but my brain is back in gear.

Or is it — because the most vexing side effect of my ongoing medication is what it’s doing to my head. I have always forgotten things and been noticeably slower at processing information than B; but the memory lapses are worse now; and sometimes I also have trouble with sequences. Get this: my packets of pills (the cause of the trouble) are labelled with the days of the week to make it easy to keep track, I presume. But I still managed recently to take Wednesday’s pill on Tuesday because, despite evidence to the contrary ( = the pill labelled Tuesday almost in my face saying, “Eat Me” ), I was so sure it was Wednesday. Then there are the days when I have entirely forgotten to take the damn thing anyway. And when I was painting the banisters in the new house (very proud of the finished job, incidentally), I found it really quite difficult to keep track of where I was up to. Had to talk myself through it. But hey, there are an awful lot of surfaces on  banisters and spindles, aren’t there?

Actually, my biggest fear is not that my difficulties are caused by oestregen deficiency. If that’s the case, I may only be suffering as many menopausal women do. But what if these are early signs of dementia? Unlikely but possible. My Dad’s decline was not pretty and I so do not want to go there – not now, not ever. How awful to sense that you are losing it. At present I don’t trust myself to remember things, so my list-making has become anxious.That’s bad enough. No wonder poor Dad was so easily stressed.

There have been two news reports in the last two days which I have found rather odd. One told us that half of breast cancer deaths occur in women over seventy. The second told us that the number of cancer cases worldwide is expected to rise dramatically over the next generation, principally due to the ageing global population. Both of these bulletins were reported as if they were cause for serious concern – and in terms of the economic impact of such levels of incidence, maybe they are. But I think there is something missing here, and it’s this: the candid acknowledgement that we will all age and die. When the average life expectancy was thirty-five (in the Elizabethan era, say), people didn’t live long enough to develop cancer – or dementia –  in the numbers that we are now seeing. Plague, or appendicitis, or any number of other conditions now easily treated would have carried them off. So I question whether cancer is actually on the rise. It is also diagnosed more readily these days (and don’t I know about that).  I think it would be far more worrying if less than half the breast cancer deaths occurred in women over seventy, because the corollary would be that more younger women were dying before their time.

I’m not suggesting that we should write the over-seventies off and not offer them the best treatment choices available to prolong their lives and (maybe even more importantly) the quality of their lives. Nor am I suggesting that as we ourselves age we should just give up and not look after our health. I do hope and expect that at seventy – and well beyond – I will still have people and things I want to live for. But I am going to die, if not at seventy, then at eighty or ninety. I can’t choose what will get me in the end. It’s quite likely to be dementia or cancer, however much I may rage against both. Same applies to you. And reports which imply that something is wrong when the old get ill encourage us to think that we can all go on for ever. We can’t. It’s the circle of life. This shouldn’t be news. Time to get real.

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…

View original post 88 more words

More cake please (a very short post)

Cheerful observation: it’s a post about cake, not cancer, that gets me my best day yet for “likes” and “follows”.

(Going to revive a recipe for date and muesli bread today).

Windmills of my mind

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.

Threads

This is where I repeat myself again, but remind myself too that I write posts first for my own sanity/therapy, and only then for my readership.

A bit a meltdown today which I didn’t see coming, although I have been aware of feeling a bit low for a few days. I started crying whilst driving over to my piano lesson, and my lovely friend/piano teacher (FPT) offered me tea and a listening ear  – and then taught me piano once I had pulled myself together. Bless her, just what I needed.

Pull yourself together. I always read the blog posts from http://www.positive3negative.wordpress.com. She has a lot more to contend with than I do, and she is pulling herself together. She is determined not to be defined by her cancer. She is keeping it just on her blog. I feel she is doing better than me (though how would I know, really).

I am perfectly well. Side-effects of medication = minimal (except, possibly, for this emotional lability). Medical prognosis = excellent. Weight gain = zero, and looking good. I also now have a permanent, well-fitting and surprisingly comfortable prosthesis, so “no one would know”.

No one would know? That phrase in itself provokes contradictory responses in me. Not everyone needs to know; but hence I can’t answer the casual question, “How are you?” when it’s asked by those who don’t (I avoided an ex-colleague in the supermarket recently). And I looked at familiar people in a meeting at school last night, and thought, “But they don’t know”.

So I haven’t pulled myself together. There’s my perfectly-well, coping, get-on-with-it, this-is-not-a-big-deal thread. But there’s the thread of shock, trauma, loss and uncertainty which caused me to unravel a bit today. These two co-exist, though the latter is not always to the front. While crying on my FPT’s shoulder, we agreed that the world is still the same, and yet at the same time, my perception of it has shifted. We also talked about my low confidence – particularly professionally – which makes it really hard for me to screw myself up to ask for something  – to ask someone to accommodate me. FPT suggested that I might be feeling an additional need to protect myself following the assaults of the summer, so that it’s harder for me to take risks. Maybe that’s right. Yesterday, I couldn’t even bring myself to phone up a tradesman we want to consult about fitting some blinds (but I have managed it today – small success!).

I am also suspicious of myself. Am I a sympathy-junkie (see “No Camellias Please” on the positive3negative blog)? Am I not letting go of the trauma thread? Will I be able to move on from here? Will I still need to write posts about cancer in a year’s time?