Be the change you wish to see in the world

Anyone familiar with http://www.beingdense.com will know that I am a Patient Advocate based in Ireland. I am very vocal about Breast Density and the lack of routine information that is provided to women when their Screening Mammogram identifies that they have Dense Breasts.

My path to Patient Advocacy was brought about and paved with a lack of information from Radiology experts. I began having Mammograms in my 40’s. I had several Mammograms, a couple of Ultrasounds and a biopsy on my right breast, all of which returned clear results. When I turned 50 I was referred by 2 Consultants to attend BreastCheck our National screening service where I would be eligible for a ‘free’ Mammogram every two years. https://www.facebook.com/BreastCheck-The-National-Breast-Screening-Programme-1395721797411264/

‘It will be ideal, you won’t have to think about it anymore, your Mammogram appointments will come to you automatically’ – that’s what I was told and that’s what I did. They were right about my appointments, they did come automatically. I had a BreastCheck Mammogram in 2011, 2013, 2015. I was following the guidelines and I felt secure and confident in my BreastCheck results letters, each time declaring my Mammograms Clear.

Following a self reported concern, I was diagnosed in 2015. I was immediately told I had a large Stage 3c tumour. I would need Chemotherapy, a right side Mastectomy, Auxiliary node clearance and extensive Radiotherapy.

‘But my Mammogram 5 months ago was Clear’, I told the Consultant and so it began …… My Patient advocacy.

It has taken me 4 years, an exhaustive, sometimes overwhelming and incredulous task, but I now know. I have been told that I had Very Dense Breasts. The Radiologists have finally answered one of the questions I began asking Four and a half years ago! What I fail to understand, even now, is WHY the expert Radiologists didn’t tell me that they were unable to ‘reliably read’ my Mammograms. As incredible as it sounds, they simply deemed my Mammograms were Clear and failed to advise me or refer me for an Ultrasound. The impact that this ‘failure to advise’ has had on my family, on my health and my life expectancy is immense and cannot be underestimated.

My experience is not unusual. It is happening more often that we hear about. 40% of women have Dense Breasts. It is not routinely reported to women. If we don’t talk about Breast Density, if we don’t acknowledge it, then we won’t have to do anything about it. This seems to be the accepted standard within our Breast Screening service. Only it’s not acceptable, because it places women at risk. There has to be a duty of care for women with Dense Breasts – at the very least a dissemination of personal Mammographic information “primum non nocere”

Beingdense.com received a poignant message from an inspirational young woman a couple of weeks ago. I am sharing it with her express permission. Tammy writes of her Mum’s delayed, Stage 4 Breast Cancer diagnosis and the effects it had on her and her whole family.

Hi there,
I recently read about all the fantastic work being carried out by Being Dense and I wanted to send on a message to express my enormous gratitude for making the public aware of breast density in the context of mammography and breast cancer screening. This phenomenon is scarcely ever talked about and needs attention. I have raised the issue with many women in my life to date and have discovered a serious lack of awareness on the topic. Breast density and health risks associated with the various grades should be common knowledge.
Undisclosed breast density data has profoundly impacted my life. A couple of years ago my mother (who has extremely dense breasts) was unfortunately diagnosed with breast cancer. I have always felt that her diagnosis was preventable and particularly tragic as she attended every single Breast Check mammogram and always looked after herself. Her last screening was one year prior to being diagnosed with metastatic (i.e. stage 4) invasive lobular carcinoma and was determined as ‘clear’ although her mammograms were almost unreadable as she had grade 4 breast density (which I found out later when I requested the scans be sent out to us). My family and my mams close friends assumed that she had simply let a problem go too far without visiting a doctor – i.e. they blamed her for not being prudent with her own body. Her breast density (and the implications of this) was never disclosed to her and she thought that receiving a letter from Breast Check that reported a ‘clear’ scan, meant that any fears she had in relation to her breasts were inappropriately put to the back of her mind. Just under a year later she received this hideous diagnosis, which she really only received because her bony metastases were causing so much pain at that stage that she was forced to visit the GP and subsequently underwent triple assessment.
I was angry for a very long time about this series of events. I contacted various people/groups in relation to how women with dense breasts should be treated following routine mammograms and was shocked to learn that it is currently not standard practise to send women with dense breasts to have additional screening like ultrasound or MRI. This seemed completely illogical to me. If a radiologist cannot properly analyse a mammogram image due to opaque, dense breast tissue – then surely follow up is warranted to ensure a patients safety. How are women meant to protect themselves if they have incomplete information about their own anatomy? It is completely disempowering to simply withhold that information for conveniences sake.
In addition, I find it particularly galling that women (like my mother) blame themselves or are blamed when their cancer diagnoses are late stage even though their cancer may very well have been obscured by dense breast tissue on routine mammography. This is blaming is misplaced, is damaging to patients and must stop.
I am very passionate about this issue and again am so delighted that finally someone is drawing attention to how serious the flaws of our current screening program actually are. The system endangers women’s lives and is nonsensical. I do not want what happened to my mam to happen to other women. No one should suffer a fate like hers if technologies and infrastructures exist and could be used to identify abnormalities at an earlier, more treatable stage.
Thank you so much again for your work. Please keep going!
All the best,
Tammy

“If a radiologist cannot properly analyse a mammogram image due to opaque, dense breast tissue – then surely follow up is warranted to ensure a patients safety”

I was deeply moved by Tammy’s words, she is an articulate young woman who really captures the anguish and anxiety caused to women by this serious breach and appalling flaw in our National Breast Cancer Screening and reporting protocol.

Thanks so much Tammy and please give our best wishes to your Mum.

I look forward to meeting Tammy shortly.

The purpose of Breast Cancer screening is to find Cancer at the earliest possible stage. A Mammogram is only 50% effective in finding Cancer in a Dense Breast. Telling a woman that she has Dense Breasts and offering her an Ultrasound will significantly increase the effectiveness of her breast imaging.

http://www.areyoudense.org http://www.breastcheck.ie http://www.densebreastscanada.ca http://www.InformMd.org.au http://www.BreastPredict.com

“Be the change that you wish to see in the world”

Mahatma Gandhi


One thought on “Be the change you wish to see in the world

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s