Breast screening – do I? don’t I?

[This post would have appeared on my Clouds blog but blogger is just playing me up totally – so here it is – and not a mention of pizza either despite my threat]

You know you have reached a certain age when you receive your first invitation for breast screening.

Oddly enough it came in an envelope marked with the familiar On Her Majesty’s Service which invariably means the tax office.

Anyway, it wasn’t tax.  It was from the local hospital in Gib. Appropriately it arrived in October which in case anyone missed it, was breast cancer awareness month.  Didn’t it start off as a single day some time many years ago back in the last century?

The trouble with allocating a month to a specific cancer is that bluntly, there are far more cancers than months.  I can imagine all the cancer charities competing for their favourite month and seeking to outdo each other in the publicity stakes.

OK, back to screening and being serious again.  My appointment is actually for later this month.  Whether I take it up or not is another matter. Now please people, do not start clicking on the comments telling me what I ‘ought’ to be doing.

I did not spend a good proportion of my working life in the NHS chairing an interdistrict breast cancer screening group to remain ignorant of the topic.  Thank you.

So, I dusted off my professional hat, put it on, and looked at the letter and the leaflet.  The first thing I noticed (apart from the appalling tiny print on the letter) was that screening for 50-64 years old women is every TWO years, unlike the three year programme in the UK.

The next difference, is that women aged 40-49 are invited annually, and women aged 65-74 are invited every three years.

I had a quick check up to look at the wonderful breast screening site in the UK, to see if it had changed.  No, the three year interval is still in place, although the age range is gradually extending to women aged 47 to 73 by the year 2016.

A couple of practicalities about the age thing.  The chances of developing breast cancer increase with age.  Older women – who basically get chucked off the programme – are told they can of course, continue to go for screening if they choose to but they have to request a mammogram rather than receive that regular invitation.

Hmmm.  Check out the graph on this site where deaths from breast cancer in the UK basically increase the older you get. And yet, older women get chucked out of the programme?

Jumping back to the younger age range, when I was in charge of our local screening programme, my colleagues reaching 50 would ask why they hadn’t received their invitation as though it should drop through the letterbox like a birthday card.

Basically, the screening programme in the UK is organised on a three year roll-out by your GP practice.  So if, for example, you live in village/town/city suburb A on your 50th birthday and the programme is targeting practices in village/town/city suburb M, you are going to have to wait for them to get back to your village.   Simple really.  You may receive one when you are 50 – but you may also have to wait until you are 53.

What the extension to include women from age 47 means, is that you will now receive one by the time you are 50 – but not until the extension of the programme has been fully implemented.  That’s easy too isn’t it?

Now, the next thing to remember is that all the studies that have looked at benefits/risks/costs of screening programmes do it on a population basis.  They look at overall health benefits to a large group, not to individuals.  Any programme has to define a target group, but because the programme starts at 50, or 47, or whatever, does not mean that you as an individual are more likely to develop breast cancer on your 50th birthday.

A bit of useless information for you.  The screening programmes within the NHS are actually a public health responsibility. Breast cancer screening is kept quite separate from breast cancer treatment, if that makes any sense.  Yes, the same staff run the diagnostic services within the hospitals, but women in the screening programme are regarded as being ‘well’ until, obviously, a point of diagnosis of cancer.

So good practice, for example, says that women in the screening programme who may be recalled for additional tests should not be in the clinic at the same time as women who are already receiving treatment for breast cancer.  The two groups of women are quite clearly compartmentalised within the NHS. (Invariably called symptomatic – sick, and asymptomatic – not sick).

Equally so, this post is not about breast cancer, it is about breast screening and how it impacts on women, and whether you should go for it.  Because, like all health care, you have a choice, and it is up to you to inform yourself and make a responsible choice that you are happy with.

With which, onto the leaflet that accompanied the letter.  On pink paper of course (yawn and see wiki link at the bottom).  The font size was reasonable.  The text wasn’t bad either, seemed mostly based on the UK leaflet, although less info.  Link to UK leaflet here. 

A couple of gripes arose while I was reading the local leaflet – but they are not limited to the Gib programme specifically, rather some contradictions within the whole screening system.

Breast cancer risk increases as women get older.  So even though women over 74 are not automatically invited for breast screening, you are still encouraged to go for breast screening every three years.  You can ask your GP to refer you.

Groan.  As I said up above. That really jars to me.  Surely you should be invited to the programme if you are at (increased) risk, and not told it’s up to you to sort it, especially when you are getting older and in some cases more forgetful.  That just reeks of cost-cutting to me.  More about costs in a minute.

And in the summary:

Breast screening reduces the risk of women dying from breast cancer.

That, is a very sweeping and misleading statement which I personally would not be happy to have published.

You can only come out with that sort of comment when you have explained how you have got there.  And this leaflet does not do that.

As I said before, screening programmes are analysed on their effectiveness over a population.  That statement above suggests that if I go for screening it will reduce my chances of dying from breast cancer.  That is so not accurate.  It might not say ‘..reduces your individual risk, roughseas, …. ‘ but as I am a woman it is not unreasonable that I make that conclusion.

I do know what it means, but most female members of the population invited for screening have not had the advantage of working for the programme and understanding the terminology and the thinking behind it.

What it will do, is – possibly – find a cancer earlier, that at some point may not have been detected for some months/years and therefore gets diagnosed ‘later’.  That is not the same thing at all as saying it will reduce the risk of dying.

What screening also achieves – over a large population, and, assuming that enough people go for the screening, which is a critical point –  is, reduces the overall deaths from breast cancer for that population.  Allegedly.

Why do I say allegedly?  Because there are other factors that affect death rates from breast cancer.  How about improved treatments for example?  New drugs?

At which point I shall provide a link to this timely and thought-provoking article from The (Melbourne) Age. 

It saves me making this post any longer as it summarises a lot of the controversy and challenges around screening.  Also, read the comments at the bottom, as there are some very differing and all equally valid points of view.

And get this extract from the body of that article:

BreastScreen Victoria’s Vicki Pridmore said those working in breast screening were well aware of the debate, but did not feel the need to talk to women about it in great detail when there was little consensus.

How totally patronising.  Surely the fact that there isn’t consensus is exactly why women need to be informed??

One of the issues that arises, in that article, unsurprisingly – is – cost.  In the UK, the programme is estimated to cost around £96 million a year.  Yes, £96M for a hell of a lot of women to be screened every three years to find out they don’t have breast cancer.

Given that 1 in 9 women get breast cancer, you can roughly approximate how many women are just wasting time and money on getting screened.

Better safe than sorry?  That’s a matter of opinion I guess.  My opinion happens to be that it is £96M that could be better spent.  How about on expensive drugs for people that DO have breast cancer that are being restricted access to them because the money pot doesn’t allow?  I would rather someone have extra months, or years of life, than screen women unnecessarily.

The health service pot is finite.  It is not the elastic band that people crazily seem to think it is.  If you all want lots and lots of screening programmes, that means there is less money to go on treatments for people who are actually sick.  Harsh but true.

Local UK health services have no choice about implementing screening programmes.  They have to do it.  Sadly they do have a choice about funding drugs for some treatments.  If I was a politician I know where my priorities would lie, and sick people would come first every time.

I’ll finish by saying, ironically, that I think the breast screening programme in the UK is incredibly well run, and well organised.  As is the cervical one, which has had to catch up with the ‘model’ breast screening programme.  I enjoyed working in both programmes.  The colleagues I worked with from all disciplines were enthusiastic, dedicated and committed to providing the best service they could.  It was one of the favourite parts of my job – because of my colleagues obviously, but also because it was very interesting.

A shout out for Julietta Patnick who is the director of screening progs in the UK.  Her enthusiasm and determination to improve and make the screening programmes an example of superb quality, is exceptional, and that they are good is in no small part due to her brilliant direction.  Whether or not you agree with her (best not to disagree actually) is another matter, but she is hellish good at her job.

Amazingly, we have something in common.  Her degree was in Ancient History and Classical Civilisation – mine was in Ancient and Medieval History and Archaeology.  Here is a totally unscientific extrapolation – ancient history graduates are more likely to become interested in screening programmes.

So please, if you haven’t already, do check out the NHS screening website, which I think is very good.  Link to breast here. Professor Patnick was bombarding the NHS with very good documents about quality and standards long before the rest of the NHS got quite so organised.  For that alone she gets my vote of confidence and the website is just as informative.

Other interesting sites:

Here is the wiki link I mentioned.  Now I wouldn’t normally recommend wiki because of the slightly dubious reputation it has for accuracy.  That isn’t to say I don’t use it for quick summaries, but I wouldn’t normally cite it as a primary source.  The clinical stuff is ok as a general read, but it is the history, and particularly the society and culture section – with the headings: Awareness month, Pink ribbon, Breast cancer culture, Overemphasis that I found interesting.  Worth a read.

Quick summary from breast cancer care

UK national stats for those of you who just love stats and can spend hours pouring over them 

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7 comments on “Breast screening – do I? don’t I?

  1. Very interesting article! I find the various study results confusing and sometimes not very illuminating, so don’t envy those who have to synthesize recommendations. In the UK Health Svc, do you have to have an invitation to get a mammogram or can you request one? Here I’ve found I shouldn’t depend on regular reminders (of various sorts) from my HMO (health maintenance org) — it’s too easy for them to slip between the cracks, so I watch for myself when tests & screenings are due & request them. I’m a big fan of people participating in their medical care.

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  2. Thanks for sending me to this post. As I mentioned elsewhere, it’s good to see someone who has been in the business, as I call it. I hope you do not think I was disparaging screening; but I do have strong feelings about x-rays. Everything in moderation, of course, and I believe that mammograms catch more problems than they cause. However, long-term, I think the mammograms yearly are overkill. I guess I try to concentrate more on prevention – keeping out toxic substances that find a place to grow and cause problems. I use organic skincare products (homemade!) to reduce the excessive estrogens that I believe end up in breast tissue. I don’t use anti-perspirant (use deodorant, it’s healthier!). I believe in supplements and anti-oxidants and such and doing as much as possible to prevent illness in the first place; all of which I believe (brace yourself, you might not like it) come from traumatic events, toxic thoughts (anger, hate, worry, fear, self-loathing, etc). These are the biggest killers of men and women; cancer grows anywhere there is an excess of emotions that the body doesn’t deal with. I shall stop here, as this is my soapbox!! Looking forward to hearing your thoughts on the emotional aspects of disease, since you were in the health industry, too!

    Cheers.

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    • It’s up to everyone to make their own decision and many people don’t do that because they don’t have sufficient information.

      I didn’t take up the breast screening one and it’s years since I had a cervical smear. Actually working in the health service and knowing more about it, made me less inclined to take it up. False positives, false negatives, biopsies, FNA etc etc. qv your point about stress below but I’ll come onto that.

      There is a post on Clouds about cervical where I got a really good comment from someone in Australia who doesn’t agree with either screening programme and points out the disadvantages and that women are being pressurised into screening tests.

      You will be saddened to hear, that not only do I agree with you about X-rays, but I agree with the rest of your post. I don’t use anti-persp either for the same reason, and I think stress is a big contributor to people’s health, although it is hard to avoid. The trouble is that you can’t do a nice peer review study on whether or not stress causes illness as it is too fuzzy, hence not being liked by clinicians.

      I don’t take the supplements, but I do eat a pretty well-balance diet (IMO). I don’t eat junk or prepared meals, I’m an avid label reader for the few jars/tins I do buy, because I think what you eat is paramount for health. I don’t think eating chemicals is good for anyone whether it’s in packaged food or sprayed on crops. So as much of what I eat, as I can get, is organic, ie what I buy and what I grow. I’ve never bought or used a pesticide in my life. Pesticides are one of my rants and I’m writing a post for Clouds on them, it just hasn’t got published yet. If you browse around here, you’ll see pictures of my salad and veg plots, and on Clouds you’ll get the ethical perspective about, well everything really.

      I enjoyed working in the NHS, but that doesn’t mean I agreed with the standard views. It was an interesting job that paid well. This is the woman who hasn’t been to a doctor in years (and that was only to get a sick note), and tends to use essential oils for insect bites, abrasions, on the pillows to relax, and vodka for any dental problems.

      Thanks for your thoughtful comment on this.

      Like

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