It’s been a while since I have written a piece for my blog on Breast Density. I’ve been busy throughout December with Breast Cancer follow up screening and scans. December will be forever marred by the memory of those words ‘You have Breast Cancer’, but it’s the start of a new decade and it brings a renewed sense of promise and hope with it. In June 2019, a promise was made – Breast Check would work with Beingdense.com and patients to help develop an awareness of Breast Density and to work towards establishing a routine notification protocol for women with Dense Breasts. Unfortunately this has not yet been made possible but Beingdense.com remains hopeful about establishing some meaningful engagement shortly.
Patient advocacy has proven to be a necessary and widely accepted part of the equation for Cancer researchers and scientists and Cancer Charity organisations.
Today is Sunday January 5th 2020, Nollaig na mBan – Women’s Little Christmas is tomorrow.
By the mid 20th century, the tradition of Nollaig na mBan had largely died out, but is slowly undergoing a revival.
Women have a proud tradition of supporting women in Ireland, particularly in the area of women’s health advocacy.
Beingdense.com has much to do in 2020. We are proud of what we have achieved in 2019 and grateful to all those who support our efforts towards establishing a protocol the routine notification of Breast Density for Irish Women #TellWomen
I want to share with you a thought provoking piece that was written and submitted to Beingdense.com by an audience member following our Mammographic Breast Density Seminar in June 2019.
Mammographic Breast Density: What women need to know
Keynote speaker Dr.Paula Gordon from University of British Columbia
Professor Fidelma Flanagan Consultant Radiologist BreastCheck and Dr. Maeve Mullooly RCSI Research
Co-Hosted by Professor William Gallagher Director of Breast Predict Programme funded by the Irish Cancer Society and Siobhan Freeney Founder of Beingdense.com Patient Advocacy
Monday 10th June 2019
Albert Theatre, RCSI.
One woman’s reflection….
As a teacher of Sociology for many years I described the functionalist theory of “Being Sick” by Talcott Parsons to best illustrate how our behaviour when we are sick, is a role that we fall in to playing. According to this school of thought, there are accepted norms of behaviour: when we are sick we take the day off work, we go to the doctor, we heed the advice and we take our medicine in order to get better. However, functionalism stands in contrast to the “Conflict theory” of a certain Mr. Marx, which emphasises the power at play in all situations. It is much more fun to study the tension in society rather than the alleged ‘function’. I think its fair to say that the medical profession in the last few decades has not been without criticism from patients who are not always happy to “play the role” and who are not afraid to question and challenge it. The rise in “alternative” or “complimentary’ medicine illustrates this dynamic.
While I have nothing but the utmost respect for those incredible people in medicine I do think it can thrive and progress when challenged. There is an unwritten contract between patient and medical practitioner today.
Patients need to be listened to.
I have had the misfortune to have two of my closest friends, my sister in law and my sister diagnosed with Breast Cancer in the last few years, so you can forgive me if I sit up and listen when it is being discussed in any setting. Like many of us I seem to be forever suspiciously squeezing and poking my own breasts in the shower, at the kitchen sink or when I think no one’s looking when I watch telly. Cancer is the ever present bogey man, indiscriminantly striking at any time and we must be informed and armed against it.
With this in mind I attended a public forum on Mammographic Density in the Royal College of Surgeons – tag lined “What women need to know”. How could I not?
It turned out to be a fascinating evening. There was a series of excellent speakers from home and abroad. Each one pin pointing the challenges met while practicing and researching breast cancer screening and breast density education.
In the hallowed halls of the RCSI we were advised that while it was all very well to lie with your arm in the air and grope in private, in the hope of staying safe no amount of poking, prodding, reading magazines, watching earnest documentaries or eating kale flakes for breakfast could protect you if you had ‘dense breasts’ and didn’t know it. Ah I hear you say “but I go for my regular mammograms”. Here’s the crazy bit. If you have dense breasts it may not be enough. Dr. Paula Gordon flown in from Canada was extremely convincing in her argument for informing all patients about their breast density. At the moment this is not common practice in Ireland. Women are not routinely told when their Mammogram determines that they have Dense Breasts.
Not having a medical degree I won’t pretend I understood all that was described and discussed. There where charts and scans and numbers and I nodded sagely but only barely kept up to be frank. Here in lies the crux of the issue I guess. The impression I got from the Irish medics was that they had a policy of informing on what they believed is a “need to know basis” and not trying to ‘frighten the horses too much’. Who could blame them? This is a scarey and highly emotive subject.
The highly distinguished, Professor Fidelma Flanagan in her precise and sincere talk admitted mammography was not a perfect test for breast cancer but Breast Check as a nationwide programme was both pioneering and highly successful and therefore still the best way forward. Can too much information confuse and alarm even more? Irish women have only just got their heads around sticking their breasts in a machine – don’t put them off now please. I felt for the wonderful professor. Irish women have much to be grateful to her for and it can’t have been easy for her to reinforce trust in the Irish cancer detection services at the moment. I’m sure I wasn’t the only one who spotted Emma Mhic Mahathúna’s ghost hovering in the room.
My overall impression from the evening was that patient advocacy, such as that of http://www.Beingdense.com who co hosted the event, is essential if we are to have a progressive modern service.
Doctors need to credit patients with enough intelligence to decide what is or is not important to the patient. While I do not believe there is a conspiracy afoot to keep us in the dark, I did get a sense that there was a frustration with patients questions and perhaps an underestimation of how much ‘withholding’ information from the public increases fear rather than abates it. Incredible as the medical profession are, they are not infallible. As patients we must not always be happy to “play a role” take your medicine and get back to work. In a modern democracy no power bloc is beyond question. It was an enlightening and extremely interesting evening overall the post talk discussion was full of positivity and support for both the medics and the advocacy group.
The promise made by Prof Fidelma Flanagan that they will work together with Beingdense.com in the future is music to all our ears. In the mean time I’ll keep poking and prodding and not be afraid to ask questions. They are my boobs and it is my health.
Roisin F (Daly)
My sincere thanks to Roisin for her insights and her opinion piece. It really helps to get perspective from a young woman who had little or no knowledge about Breast Density before attending the Seminar. We had a full house in the Albert Theatre last June, it would be wonderful to make some more progress in 2020. Our goal is to see routine Breast Density reporting established as soon as possible. This needs to happen. #2020goals