Anyone out there?

For a while I lurked on the forums (or should that be fora?) of the Breast Cancer Care website, but no one else was writing about screening and overdiagnosis. So eventually (late July), I posted there as follows:

Anybody else out there who has been diagnosed with IDC following routine mammogram (no symptoms) and has since discovered that overdiagnosis and therefore overtreatment are recognised by the medical community as potential harms of the screening programme? I am outraged that I did not know, and now find myself facing treatment for a condition that may not need it. Yes, there is research which suggests that some cancers will not grow, and some may even disappear; and that bc mortality rates among the age-group of women who are screened are unchanged, though more women are diagnosed these days.And I’m not talking quacks here, but evidence-based research (the Cochrane Collaboration etc.)

I am probably going to have surgery (WLE and SLNB), but have found the decision-making really hard, as I’ll probably never know if I really needed to have the treatment or not. It’s a lot to go through for no reason, isn’t it? And I am furious that I did not have balanced information when I was invited for the mammogram – so that I could choose whether it might be worth this stress or not.

The nurse at the bc care unit says she doesn’t know of anybody else who feels like me. If you do, please get in touch.

I had 10 responses, and posted one more comment myself before the thread fizzled out –  within a week. This is what I wrote about it to my siblings:  — there’s little fellow-feeling from other women on the bc forums, whose responses have been: blank incomprehension, condescension, veiled hostility, suggestions that I have anger management issues  –  let me know if you think that might be true; recommendations not to Google, to trust the doctors, and to check my sources. As if that isn’t the first thing I did.

But there were people out there: the Professor of Public Health at Sydney saw my article “Damned if you do –?” and wrote me a couple of lovely supportive emails. Here is part of the first one:

I just want to tell you that, as a an epidemiologist and public health physician I have been writing about overdiagnosis in screening for over 10 years (for example see attached).  I have been advocating for better information for women about the downsides of screening as well as the benefit for all these years.  It has not been a popular message, and still isn’t here in Australia. I have been described as dangerous, irresponsible and responsible for women dying of breast cancer, and men from prostate cancer. But finally things are slowly changing, especially since the Independent UK Panel review findings last year. That report is so valuable.

Your story is outstanding. Thank you so much for writing it. It is heartening to me to know that I’m not just imaging a problem.   I hope the BMJ takes it and I would encourage you to publish it everywhere you can.

She then put me in touch with Hazel Thornton, herself a former bc patient, who has been campaigning in the UK for 20 years for better information about screening and about the need for a better evidence base for both screening and treatments. She is easily Googled, and her co-authored book, “Testing Treatments” is freely available on the internet. Hazel has written me a number of lovely emails, attaching reading suggestions, and is clearly really aware of my dilemmas, having experienced some of them herself. While I am so glad to know that I am not just being obstreperous and crazy, I have to say that the reading is cold comfort in many ways. Just makes me realise how little certainty there is out there about what the best treatment (or indeed non-treatment) is.

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