Damned if You Do

dice

You go for your 3-yearly mammogram reluctantly, because it’s uncomfortable. But the leaflet that came with your invitation seems written to be reassuring, and you go in the same spirit with which you go to dental check-ups. You think it’s the responsible thing to do. You feel fine and have not detected anything unusual. Maybe, like me, you always considered yourself low-risk (no family history, relatively healthy lifestyle, breast-fed two babies until over a year — ).

Outcome 1: you get a letter saying that your results are normal. You get on with your life, like 95% of those screened.

Outcome 2: you, like me and 5% of screened women, get a call-back – they need to do further tests.

So – a little bit concerned – you go for further tests: another mammogram, and ultrasound, and maybe a biopsy. After waiting an excruciating 10 days, you go back for your results.

Outcome 1: your results are normal – it was a “false positive”, or you are diagnosed with a benign breast condition that does not require further treatment. You breathe a sigh of relief and get on with your life, as do 4 out of 5 of those who got a call-back.

Outcome 2: you are diagnosed with a “pre-cancerous” breast condition for which surgery and radiotherapy is recommended. Or, like me, you are diagnosed with a malignant breast cancer for which surgery, radiotherapy and further tests – and possible treatment – for the spread of the cancer are the standard treatments.

So now you can’t just get on with your life. You know that survival rates are very good these days and that you probably don’t need to rush to put your affairs in order, and you brace yourself for the next few months. But then you start your research. You find that the problem of “overdiagnosis” of even invasive malignant breast cancers is well-known and acknowledged by the doctors (Independent Review, 2012). And when you look back at the leaflet which accompanied your original invitation for screening, you notice the following small paragraph:

Screening can find cancers which are treated but which may not otherwise have been found during your lifetime.

What is not on that leaflet, though, is any reference to recent and meticulous research, well-known to the medical community (Zahl, Gotzche and Maehlen, 2011) which suggests that some cancers detected by mammography for women in the 50-69 age group regress on their own, without treatment. Nor is there any reference to the recent Independent Review of the screening programme which clearly acknowledges overdiagnosis as a serious problem. Estimates of the possible percentage of women overdiagnosed ( Independent UK Panel on Breast Cancer Screening,2012) vary widely from as low as 2% to as high as 52%, while the Nordic Cochrane Centre suggests that, over a 10-year screening period,10 women will be treated unnecessarily for every life that is saved.

You naturally don’t want to undergo invasive and inconvenient treatment that you don’t really need, and which carries the risks that are usually associated with surgery; plus those associated with radiotherapy; plus the risk of lymphoedema which could affect your arm and shoulder indefinitely. Oh, and then there’s the psychological and cosmetic effects of having a lumpectomy. And you are starting to feel cynical. Of course survival rates after breast cancer treatment are good if some of the “survivors” weren’t ill in the first place. You have also lost faith in reassuring statistics, since you were in the unlucky 5% who got a second call-back, and then the unlucky 20% of that 5% who got a diagnosis. So why would you not be in the minority (if it is indeed a minority) who do not actually need any treatment?

But the medical establishment will, of course, recommend the standard course of treatment. It will be rightly pointed out to you that they and you cannot know if your cancer would regress if nothing was done. “We do more than we need to because we don’t know how to do less”, says Bhuvaneswari Ramaswamy of the Ohio State University Comrpehensive Cancer Center (quoted in Beck, 2012). This is despite the fact that for men with prostate cancer, there is an established approach called “active surveillance” which involves regular monitoring. A quick Google search, and you can find information on this – but not on any parallel approach for breast cancer. Alternative treatment pathways do not seem to be considered. There is some suggestion that the growth and regression of breast cancers may be linked to natural hormone levels (Zahl, Gotzche and Maehlen, 2011), but endocrine therapy as a first line of treatment for asymptomatic cancers is not recommended in the NICE guidelines (NICE, 2009).

So now I find myself in the invidious position of having to decide how much treatment to have for a condition that might not need it. Whether to become a patient and go for the whole, uncomfortable, inconvenient hog – with its attendant long-term risks – and get it over with. Or whether to barter with the medics for some hormone tests and possibly therapy and regular monitoring. Or to opt for some aspects of treatment but not others. And how to come to terms with whichever choice I end up making.

When I was pregnant for the second time, my husband and I opted to have an amniocentesis, as I was 37. We were fully informed: we knew that by starting down that screening journey, we were possibly going to be faced with a heartbreaking decision. But we held thumbs, and on that occasion our luck held.

This time, I started on a screening journey without all the relevant information, and unaware of the decisions I might have to make. I feel I ought to have known better, which compounds my sense of having been duped. I have realised too late that you only have to scratch the surface of the internet to unearth widespread doubt in the medical community – and I’m not talking alternative therapists or quacks here – about the net benefit of screening. There is a recognition that women need to be given more information (www.informedchoicesaboutcancerscreening.org), but I didn’t get the message – and nor may others invited for screening yesterday, today, or tomorrow.

This is, sadly, not a new story – but it was new to me. This article is an attempt to put other women in the picture now. The screening programme may, to some, be a blessing. To me, it feels like a curse.

Postscript at 20th August 2013: Since I wrote this at the end of June, I have seen two breast cancer surgeons, the second of whom sent me for further investigations and found a second lump. As a result, last week, under severe psychological strain which I realised was unsustainable, I had a mastectomy and a sentinel node biopsy. I will never know if this was treatment I really needed.

And second postscript: In September, the NHS Breast Screening Programme published its revised leaflet, giving much clearer and more balanced information to women invited for screening. Just four months too late for me. Though even this leaflet starts by suggesting that the screening programme saves lives – which, in my view, is a matter of serious doubt.

References

Beck, M (2012) “Can There Be Too Much Breast Cancer Treatment?” HealthJournal@wsj,com[Online] Available at: http://online.wsj.com/article/SB10000872396390444914904577623522202606392.html (Accessed 20/6/13)

Great Britain, Department of Health (2012) NHS Breast Screening (written by the Cancer Research UK Primary Care Education Research Group)

National Institute for Health and Clinical Excellence (2009). Early and locally advanced breast cancer diagnosis and treatment

Nordic Cochrane Centre (2013) Screening for Breast Cancer with Mammography

Zahl P H, Gotzche P C and Maehlen J (2011) “The Natural History of breast cancers detected in the swedish mammography screening porgramme: a cohort study” Lancet Oncology, 12 (12), pp 1118-24

Independent UK Panel on Breast Cancer Screening (2012).The Benefits and Harms of Breast Cancer Screening: An Independent Review


10 comments

  1. This is what makes me so mad. I have no idea if my treatment was necessary or if I will go through the rest of my life maimed for nothing. I turn 50 this year and can expect to live about as much longer. My “breasts” are really abdominal tissue that has been moved. I have no feeling there at all. In eight short years, I will have been married as long without functioning breasts as I was with. I wish I had been offered the chance to just be moniteered. As it is, I have suffered a HUGE loss in quality of life, perhaps for no reason.

  2. At the time, I was given to understand that it would help me recover if I looked and “felt” more normal. It makes finding clothes easier, but does nothing in terms of my anger and sorrow.

    • Yes, the anger and sorrow I recognise, though it comes and goes for me. I don’t know if I will opt for reconstruction later, but for now I’m happy to wear scarves – haven’t even gone for my “proper” fitting for a prosthesis yet – just got what they call a softie. But it must be harder when it’s a DX —

  3. Hi there. I just happened to see your account of my book on your blog and am sorry it wasn’t really that useful for you. I didn’t really write it for those of us going through it, more for health professsionals and unfortunately the short handbook I have written for women in the situation hadn’t come out in September, when it sounds like you bought my other book. It is out now and called, Emotional support through breast cancer, the alternative handbook and you can get it on Amazon UK for 5.99. I can’t promise you’ll find everything in it totally to your liking, but maybe a little more so than my other one…. just thought I’d write and say that. Warm wishes

  4. Thank you for writing, especially as I was rather ambivalent about your first book – generous of you. I will look out for your new one; although I appear to be atypical in that my principal ongoing emotional/psychological struggle is with the issues of informed consent and overdiagnosi/treatment. Very few people “get” this, though fortunately I am in touch with one or two who do.

    All good wishes for you own good health.

  5. Pingback: I Got No Idea if my Treatment for #BreastCancer was necessary… or not… | DES Daughter Network

  6. Here in Australia the discussion on the risks and harms of women’s cancer screening is in its infancy, we’re still using celebrity endorsement to urge women to screen. Your Iona Heath is here at the moment speaking at the University of Sydney on “Too much medicine”. The lecture has been kept very quiet, that was also, the case when Professor Peter Gotzsche visited us earlier in the year. The media reported after his lecture, “A Danish Professor with some controversial views on breast screening…” not a fair way to describe the head of the Nordic Cochrane Institute. Controversial? That’s not right either, but women here are still being fed a steady diet of, “Just screen!” The fact is the harms of breast screening have been known for a long time now. Screening is a close call, a very close call, I’ve concluded the risks with screening exceed any benefit, an informed decision. (I had to do my own research)

    I know we don’t respect informed consent (or even consent itself) in women’s cancer screening, know we often ignore the evidence when it doesn’t suit some, and really don’t care about worrying and harming women…as long as we can pretend we’re saving lives.

    Interesting too, Iona Heath was interviewed on ABC Radio yesterday. (the online service)
    The female journalist took a sharp intake of breath when Iona said she had never had a mammogram. “What!!! That’s certainly NOT advice I’ll be taking” was her response to Iona, who calmed said her position was supported by the BMJ and many others. It was a reasonable position to take…the journalist, who sounded very concerned, said she didn’t want women rushing out and cancelling their mammograms because of their interview. This is fairly typical…so many are still horrified that a woman might choose not to screen.

    I’m so sorry to hear of your experience, but I’m not surprised.
    It should be a scandal, it says to me women are still viewed very differently by the medical profession and others. It’s unacceptable, attitudes and practices must change, I believe that starts with every individual woman. Screening programs rely on numbers, as more women walk away, they’ll be forced to change, and with more informed women around, the dirty tricks to capture us fall flat. Hopefully, the fortune being wasted can be re-directed into seriously under-funded areas like mental health.
    Thank you for writing about your experience, you’re helping a lot of women.

  7. Hi, it does me good to hear that my experience is still ringing true with women two years on — thank you for writing. I have been invited recently for my 5 yearly smear test and will be researching it very carefully before I decide whether to go for it or not.

  8. I am sorry you have had to make such difficult decisions. I too feel betrayed by the medical profession but for different reasons. Finally free from 40 years of depression after coming off the benzodiazepine, nitrazepam. 40 years of antidepressants had little to no effect. Now I know why.


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