A mammogram may break your bones

images 2

Sounds unlikely? Read on —

This Autumn – a full two years and more since breast cancer treatment – has been assessment time for me. For the last six weeks or so, I have been off both my injections and my pills in order that my natural hormonal status can be checked. Having had the second of two blood tests today, I await the outcome, and if I have gone through the menopause, then I am done with the monthly injections which have made me post-menopausal. This would be good.

Today I also had a bone scan to check the effect of these medications. I feel so well, and am more active than I have been for years, but as Zoladex (the jabs) and Arimidex (the pills) both carry a risk of reducing bone density above what would normally be expected at my time of life, I shouldn’t really have been too surprised at the findings. My hips have lost 6% of their density – which is just OK – just in the normal range apparently. But I have lost a centimetre in height in two years, and my spine has lost 13% of its bone density. Which means I have osteoporosis.

I have tried. The gym, walking, swimming, good eating (mostly). But I have a small frame which puts me at greater risk (all my big-boned, well-padded friends out there – rejoice for yourselves). And swimming is good for you but doesn’t count as weight bearing. Cycling doesn’t count either. Damn. Better start dancing.

The advice is to take care with lifting. Avoid falls, so no going up ladders. The scanning person (don’t know the term but she was very nice) even said not to go out if it was icy! Shit, housebound in bad weather at 56??! The accompanying booklet I have been given suggests that even small movements (like lifting a shopping bag) or small bumps could cause a fracture. That’s not cheerful reading.

And then of course the medics will recommend more medication (I have to see my GP in two weeks’ time): alendronate, which by all accounts messes with your gut; and calcium tablets which just may be associated with a higher risk of heart disease. That’s why I have avoided them so far and just eaten my kale and my almonds.

So I have more difficult choices ahead. Shall I just not go back on Arimidex, which keeps me oestrogen-free (so reducing the risk of  recurrent breast cancer), but thereby increases my bone loss? Shall I just up my calcium intake through food – I would have to eat more dairy products with their possible association with breast cancer – and refuse the tablets?

The pity of it is that maybe all these mental and emotional gymnastics could have been avoided, not to mention the current fragility of my bones. It feels as if one thing leads to another once the medics get hold of you. It makes it hard to be grateful, and I should be so grateful for all this care and medication which is free at the point of delivery. God bless and preserve the NHS, I still say.

So – anyone considering a mammogram out there – remember: it may have long term effects, and cause you problems you never thought of. Possibly for no good reason. Though that you will never know, and living with the uncertainty is hard. Sometimes very hard.

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.

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.