(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:

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.



  1. Does the Danish research say some small growths are benign and therefore one doesn’t need to worry about them or that they disappear…? I wasn’t clear from the Australian clip.

    • Thanks Rose. The Scandinavian research compared two populations of women. One group was screened every two years; the other only at the end of a six year period (this was not a trial but happened this way because screening was being introduced at different rates in different geographical areas). There was a lower incidence of cancer in the women who were only screened once, so the conclusion was that the cancers diagnosed in the other group at 2 yearly intervals didn’t come to anything —

  2. How annoying that they cut the bit about you not having access to the current information, though honestly, your anger comes through, as does the sense that you don’t trust the information you *did* get. So still a point well made. And you, Halton and Lancaster all come out looking very glamorous!

    Since you’ve been writing about this I’ve been thinking about cervical screening too. I had some fairly invasive treatment for ‘abnormal cells’ in my early 20s, and my sister had exactly the same treatment at exactly the same age… I was the person who went with her and so I saw it from the hand-holder’s point of view as well as the patient’s point of view. The sense I get now is that level of change would just be monitored, if that. In fact the whole screening process has changed, they now test for HPV as an indication of risk rather than cell changes. I am fairly sure the whole thing was totally pointless but (though all remains intact) it was an experience that has affected me in many ways, none of them good. Yet I do still trot along for my three yearly smear tests. Hmm.

  3. Thanks Jo. I think you’re right about goalposts changing – when does abnormality become disease? Definitions do shift. I don’t know what I’m going to do about my next cervical screening invitation – haven’t read up about that one yet.

  4. I thought your point came across very well Elizabeth. Your own example and mention of your anti-screening blog strengthened the argument of the Danish Professor and Dr Barrett. It was also clear that your experience was prior to the new UK guidelines of 2013 which would have given you more information to base your own decision on. Very well done.

  5. I wasn’t surprised to see the breast cancer surgeon fall back on scare tactics, “I’d hate women to hear all of this and stop having mammograms and we end up seeing more advanced breast cancers”. This says to me he hasn’t understood the evidence, has blind faith in screening or understands the evidence but chooses not to share that knowledge with women for his own reasons. Either way, you can hardly respect informed consent when you fall back on scare tactics.
    I’d have more time for the pro-screening doctors etc. if they addressed the evidence, acknowledged over-diagnosis is a serious risk/concern and respected a woman’s right to make an informed decision and yes, that might be NO to screening. So many still think they have the right to accept risk on our behalf and make decisions for us, totally inappropriate. It’s almost blaming women who choose not to screen and get breast cancer, “silly woman”..we have to move away from these deeply entrenched disrespectful attitudes.

    I don’t trust women’s cancer screening in this country, I’ve been appalled at the “information” given to women over the years and the unethical (and possibly more) conduct of these programs, medical associations, and some doctors. Informed consent is a legal right for men AND for women, but it’s largely denied to women here.
    We have a cervical screening program that has ignored the evidence for decades, it seriously over-screens women leading to huge over-treatment and excess biopsy rates for no additional benefit. (to women)
    We still see women misled, pressured or coerced into screening when they ask for the Pill or visit their doctor for any reason, opportunistic screening is encouraged, and our GPs receive target payments, but this potential conflict of interests is never mentioned to women. There was never a need to worry and harm so many to help so few, our new program will again side with excess. I’ve always assumed vested interests are firmly in control of these programs and with most women in the dark, it’s easy for this sort of abuse to continue.

    I’ve never taken part in either program, some/many don’t accept a woman has a right to choose, so you have to stand firm in the consult room. I found being informed made it easier, if you’re asked by a GP “Where are you getting your information?” (waiting to pounce) they’re always floored when I come back, “Oh, the BMJ, The Lancet, The Nordic Cochrane Institute…”
    I’ve found many GPs have a poor knowledge of screening, and simply follow/push the recommendations, interesting it often feels like a law, not an offer, “you must/should have pap testing” or “you’re 50 this year so time for mammograms”. I’ve met middle-aged women who didn’t realize screening was actually a choice!

    The best healthcare decision I ever made was to do my own research, make informed decisions about screening and to go doctor-shopping, find someone who’d put my interests first and respect my right to choose. (Interesting that quite a few female doctors choose not to have cancer screening, but feel they must pressure their female patients or know their patients can’t make an informed decision either way, given the poor information provided by the screening authorities)
    I flew to the UK to attend a conference in 2013, I wanted to hear Peter Gotzsche speak at the Evidence Live Conference at Oxford. I was impressed with the level of discussion in the UK on informed consent in women’s cancer screening, I hope that discussion starts here too – it’s LONG overdue.
    Breast Screen here still use celebrity endorsement to encourage women to screen, at this point I consider that almost culpable.

    It’s shocking but when a family friend in her early 70s was diagnosed with early breast cancer after a mammogram, faced surgery, and later told me she was lucky, it was caught very early, I couldn’t help myself, “I wonder if she was over-diagnosed”.
    Her daughter is now considered high risk and has started having 2 yearly mammograms in her 40s, and this poor lady lives every day fearing cancer will return, she continues to have screening fearing cancer might appear in the other breast. She’d like to have them 6 monthly, but her doctor has recommended yearly for at least the next 3 years. I know Professor Baum, UK breast cancer surgeon, worries that too frequent screening might actually cause breast cancer, especially American women who start having annual or 2 yearly mammograms in their 30s.
    I also, worry about finding a lump, they usually send you off for a mammogram, but it seems to me that the last thing you’d want to do is crush a breast lump. It just doesn’t make sense to me.

    The whole area worries me…bottom line: we need to protect our asymptomatic body from anything that doesn’t satisfy our risk v benefit assessment. Now that means heading over to the NCI’s website and reading their excellent summary on breast screening, OR, if you’re interested in cervical screening, watch the Finns and Dutch, the latter are about to introduce the best program in the world (in my opinion) for those who wish to screen. MOST women are HPV- and cannot benefit from pap tests, but can be harmed…and you can self-test for HPV easily and reliably with the Delphi Screener.
    Thank you for your valuable contribution on this subject.

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