Being Dense leads Irish Advocacy

Your Mammogram may hold a Breast Cancer indicator that is currently not shared with you because there is no standardised Breast Density notification protocol in place. Your Breast Density matters and you need to know about it.

My Breast Cancer Diagnosis came within 6 months of having a clear Mammogram.

The MRI scan report “at least 5.5 cm in size” How this had not been seen on my Mammogram?  I began a gruelling schedule of Neoadjuvant Dose Dense Chemotherapy after scans showed the Cancer had spread into my Axillary nodes and into my Internal Mammory nodes. I was told immediately I would need a full Mastectomy and Axillary Clearance followed by 30 rounds of Radiotherapy.

I initially thought that the Cancer had been found early because I had always been breast aware and because my recent Mammograms had been reported clear. When I was subsequently told my Diagnosis was Stage 3c Invasive Lobular Breast Cancer with nodal involvement, the severity and stage of the Diagnosis hit hard.

As I tried to come to terms with this late Stage Diagnosis, I read as many evidence based studies as I could find about Invasive Lobular Breast Cancer. I discovered that mine was a slow growing Breast Cancer, a unique histologic subtype. The 2nd most common type of Breast Cancer.
These research studies on ILC led me to question how a slow growing Breast Cancer of approx 6 cm wasn’t seen on my Mammogram 6 months earlier leading up to (before) Diagnosis.

When I read an article about Breast Density and associated risks in Mammogram Screening, I felt compelled to find out more. I had been having Mammograms for many years but I had never heard of Breast Density or having Dense Breasts. None of my doctors, Radiologists had ever mentioned Breast Density to me.

My questions about my Breast Density were met with various reactions and responses. Sometimes complete silence. Occasionally “Oh we don’t do that here”. “You’d have to ask a Radiologist ” or “Why do you want to know?” “Where did you hear about that?” “Are you a nurse?” My interest in my personal Breast Density elicited few informative answers.

There were just too many similarities and I kept coming back to this story by Nancy Cappello https://www.areyoudense.org/stories/nancy/  “I did what the medical field and the countless number of cancer advocacy groups told me. I ate healthy, did monthly self exams, exercised daily, had yearly 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”

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. Nancy Cappello

Having Dense Breasts obscures Breast Cancers – not just small Cancers but big Tumours too. The Denser the Breast the bigger the risk that a Cancer could be missed on a Mammogram. Having Dense Breasts is an Independent risk factor for Breast Cancer. It’s associated with contralateral Breast Cancer and is thought to be hereditary. Some but not all women see a reduction in their density post menopause. 43% of women over 50 have Dense Breasts.

I was Diagnosed in December 2015. I had been having Mammograms since 2002, all through my 40’s and into my 50s. No one had ever mentioned Breast Density to me in my 13 year history of Clear Mammograms.

Irish Women need to know about their Mammographic Breast Density. We need to be given this information. 

It’s 2021, there is overwhelming and compelling evidence to support a need for standardised protocol to include dissemination and notification of personal Breast Density information for all women who have any type of Mammogram.

So far in 2021 our focus has been on establishing contact with our Political Parties and The National Screening Advisory Committee.  Information has been circulated to our Minister for Health Mr Stephen Donnelly and his advisors.

https://www.irishtimes.com/business/technology/irish-health-blog-educates-on-link-between-breast-density-and-cancer-1.3906988

Becoming a graduate of the IPPOSI Patient Education and Training 2019 has been a standout achievement. IPPOSI provided a network of highly skilled tutors throughout the year, giving students an understanding of Clinical Trials processes, Drug Safety Evaluations and Health Product Regulation and Assessment. We had access to expert speakers, clinicians and researchers and there were valuable workshops on media skills presentations too, excellent learning opportunities and fantastic peer to peer support.

Experience /Areas of Interest

  • Founder of www.beingdense.com Essential Breast Screening and Early detection of Breast Cancer for women with Dense Breasts 2016
  • Founder Member of Lobular Ireland, www.lobularireland.com Lobular Ireland is an Organisation where Patient Advocates, Clinical Specialists, Researchers and Scientists have come together to raise awareness and enhance an understanding of ILC and to help advocate Internationally for Clinical Trials and ILC Specific Research. Invasive Lobular Breast Cancer is a unique histological subtype, 2nd most common Breast Cancer, 6th most common cancer in women.
  • Irish Patient Advocate to the www.elbcc.org European Lobular Breast Cancer Consortium 2019
  • Graduate of 2019 IPPOSI Patient Education Training Programme
  • I enjoy collaborating with many organisations on PPI, chiefly; www.BreastPredict.ie  www.PrecisionOncologyIreland.ie  www.lobularbreastcancer.org www.MarieKeatingFoundation.ie  www.elbcc.org
  • Member of the Susan G Komen.org Advocates in Science (AIS) Program
  • Member of the Irish Cancer Society PPI patient review panel 2019 – 2020
  • Member of the HPRA Patient Forum Current

Patient Involvement and Experience

  • Co-Organised and Co-Hosted with BreastPredict, the 1st Irish Mammographic Breast Density Seminar June 2019 in The Royal College of Surgeons in Dublin
  • Irish representative and Patient Advocate to the European Lobular Breast Cancer Consortium
  • Represented and spoke on behalf of European Patient Advocates at the 3rd and 4th ELBCC Annual Conferences in KU Leuvan November 2019, Virtually, on-line October 2020
  • Initiated On Line webinars with International and Irish Scientists and Researchers for the Lobular Breast Cancer Community
  • Panellist on several PPI discussion platforms
  • Contributor to Radio, Print Media and Social Media Awareness issues
  • Advocate for The Marie Keating Foundation – Breast Cancer Campaign #NotJustPink 2020
  • Facilitator/Admin/Moderator to Patient Focus Groups and Patient Support Groups on Social Media

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