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.

Advertisements

3 comments

  1. I know and understand that the statistics do definitely support what you are saying, having said that, Sue, who you may remember was a teacher within SATS too, was called for her screening 3 months early for some administrative reason I believe and the beginnings of a particularly aggressive form of cancer was found which involved her having the lump and surrounding tissue removed, not a full mastectomy, and her surgeon told her she was very lucky that it was found before the screening had been actually due as the prognosis would by then have been far less certain had treatment not been given when it was. The trouble is, knowing one case such as that, weighs much more heavily than the statistics even when objectively one knows they are right!!

    • Of course in this situation mammograms look like a blessing. We can’t know what the exchange between Sue and her surgeon actually was like, and I’m glad if she is settled and happy with her treatment. But you know the old saying that if you have a hammer, you’ll see a nail? I have become a bit sceptical of some standard medical advice, particularly once I discovered that my consultant had no idea that a House of Commons Select Committee had called for evidence on cancer screening. I know she’s a good surgeon (= good at cutting and sticking) but I’m not sure she has a balanced view.

      The whole issue is contentious and likely to remain so —


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s