An Entirely Different Story

The first time I saw the words BREAST DENSITY I was sitting in a local hairdressers. I remember it so well because that same week I had been diagnosed with Invasive Lobular Breast Cancer. It was a few days before Christmas 2015 and I was already poignantly aware of what the New Year held in store, 4 months of dose dense Chemotherapy, Mastectomy and Auxiliary node surgery and weeks of Radiotherapy. It would be the last time I would need anything done with my hair for a long time, I would lose it all in a few weeks.

My phone pinged, a message from a very close friend and there it was. My first encounter with the words Breast Density. I sat there surrounded by all the talk that goes with the wonder of Christmas, looking out at the street full of Christmas shoppers and twinkly lights, Christmas FM was playing. I was truly shocked at what I was reading, Nancy’s Story, written by a woman I had never met but I would get to know to whom I now owe a huge debt of gratitude.

Dr. Nancy Cappello’s Story

I did what the medical field and the countless number of cancer advocacy groups told me.  I ate healthily, did monthly self exams, exercised daily, atten mammograms AND had no first-degree relative with breast cancer. Little did I know at the time that there was information about my health which impacts my life outcomes that was being kept from me – the patient – and others like me.”

Dr Nancy Cappello (2004)

I call it the best-kept secret – but it WAS known in the medical community. I have dense breast tissue – and women like me (2/3 of pre-menopausal and 1/4 of post menopausal) have less than a 48% chance of having breast cancer detected by a mammogram.

Dr Nancy Cappello (2004)

Read Nancy’s Story here.

I recognised lots of similarities in Nancy’s story. I too had a history of clear Mammograms. I had just been Diagnosed with a 7cm, Stage 3c Breast Cancer which had spread to my Lymph nodes. I had no history of familial Breast Cancer. I had never missed a Mammogram, ever. ALL my Mammograms had been reported Clear, just like Nancy’s. My Diagnosis came just 5 months after my most recent Mammogram, it was reported was Clear.

“thinking that I was an educated patient, following the medical community breast screening guidelines – “Why didn’t the mammogram find my cancer?”

Nancy Cappello (2004)

First chance I got in January 2016, I asked if I had Dense Breasts. The Radiologist told me that I did not and that Breast Density had nothing to do with my screening Mammogram not detecting my Breast Cancer earlier. So, there it was, I didn’t have Dense Breasts, but I did have a large Breast Cancer that my screening Mammogram had failed to pick up. This information was to have a profound impact on my life. It was some years before I was to feel the full impact, on both me and my family.

I found Nancy’s Story captivating and began to ask friends and family, none had heard of Breast Density either, not even an Oncology nurse friend of mine. I contacted Dr Nancy Cappello by email, she encouraged me to delve further and share what I learned with other women. She would help where and when she could. She forwarded links to research. After reading as much as I could find in terms of evidence based research and believe me, there is decades of it, I decided to start an Irish advocacy to raise awareness and education on Breast Density in Ireland.

There’s a Fatal Flaw in Breast Cancer Screening. We wait for a highly skilled Profession of Experts to do the right thing. Early detection of Breast Cancer, through Supplemental Screening of women with Dense Breasts. Tell us what you can AND can’t SEE on our Mammograms. Currently women in Ireland who attend for Mammogram screening are not routinely told when their Mammogram determines they have very Dense Breasts.

Ultrasound increases detection from 48% to 97% for women with Dense Tissue. Women with extremely Dense Tissue are 5x more likely to have Breast Cancer when compared with women with Fatty Breasts and that research on Dense Breast Tissue as an independent risk factor for Breast Cancer has been studied since the mid 70’s.  Women with Dense Breast Tissue have double jeopardy – A greater risk of having Cancer AND are less likely to have Cancer detected by Mammography alone.

Our very first post was born in Feb 2016. Since then I’ve met some wonderful people, patients, researchers, scientists.

Professor Jack Cuzik is Head of the Centre for Cancer Prevention at Queen Mary, University of London. – Breast Density, a major risk factor for Breast Cancer that you’ve never heard of, an Interview with Dr Mark Porter BBC4 Radio Inside Health Professor Jack Cuzick, John Snow Professor of Epidemiology
Centre for Cancer Prevention
Queen Mary University of London
London, United Kingdom

Through my involvement in Patient advocacy I have been invited to many PPI seminars. With I had the great pleasure to meet Professor Jack Cuzick – a leading, world Breast Cancer Researcher. He has written and spoken extensively on the issues and risks associated with Breast Density.  He was the Keynote speaker in Universty College Dublin, in February 2019.

Professor Cuzick

“That’s correct, Breast Cancer might be missed yes.  And it’s very clear that it is being missed in many cases.  So there’s a lot of discussion about women who have Dense Breasts and probably don’t get as much protection from a Mammogram so they need additional (Supplemental) screening – Ultrasound Screening, in some cases MRI Screening. In terms of the more common factors Breast Density dominates things like weight or like alcohol consumption.  It’s more important than things like hormone replacement therapy.  So it really is an important factor.  The problem with Dense Breasts is that it essentially makes, in some cases, the breasts completely white.  Now the way you would detect a cancer with standard Mammography is to look for white spots on the breasts, so in Dense Breasts they’re completely hidden and you just can’t see them.”

Jack Cuzick (August 2017)

I will always be grateful to Dr Nancy Cappello Her legacy lives on and her advocacy has saved countless womens lives around the world.

13 years too late and an entirely different story

I had my first Screening Mammogram in 2007. In 2020 I was told that, in fact, ALL my screening Mammograms showed that I had Extremely Dense Breast Tissue.

I have waited 13 years to be told. It has taken a huge effort and way too much out of me but in March 2020 I was given the facts. I had Extremely Dense Breasts. The Radiologists who read my screening Mammograms could have told me but they didn’t. 

If I had been told in 2010 that I had Dense Breasts, I would have ensured that I had Supplemental Ultrasounds as well as Mammograms in the years to follow.

A slow growing Breast Cancer developed ‘unseen’ by Radiologists on consecutive Mammograms that were all reported as clear. It was about 3.5cm in size when I had my last ‘CLEAR’ screening Mammogram in 2015.

5 months later I requested a Breast Ultrasound because I was very unwell and felt something wasn’t right. I was Diagnosed with an Invasive 7cm Breast Cancer Tumour, which had now spread to my lymph nodes.

Had I waited another 19 months, until my next scheduled screening Mammogram, it could have been a very different story. Acting on my own intuition really paid off and may have saved my life.

On the other hand, had I been told by my Breast Radiologists that they were unable to reliably read my screening Mammograms, because I had Extremely Dense Breast tissue, THAT PICTURE would have told an entirely different story.

None of my Mammograms were clear. They ALL showed Extremely Dense Tissue, rendering them impossible to read clearly and reliably.

It has been a deliberate decision NOT to inform women who have Very Dense Breasts as determined by their screening Mammogram or recall them for Ultrasound. We maintain that this practice is harmful to a large cohort of women and must stop.

Out of all the women in a Breast Screening population 40% will have Dense Breasts, Heterogeneous and Extremely Dense are what is generally considered to be Very Dense requiring a Supplemental Ultrasound.

Find out more about Breast Density
What women need to know
Patient advocate European Lobular Breast Cancer Consortium http://www.ELBCC.ORG
Lobular Breast Cancer IRL

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