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.
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