Being Dense

Invitations to speak at International events don’t come too often for Independent Patient Advocates like Siobhán Freeney of http://www.beingdense.com so when she was invited to speak at a prominent scientific meeting in Italy l there was no hesitation. She has been a passionate, outspoken Advocate for European Women around Lack of Breast Density Notification and Inadequate Screening for women with Dense Breasts.

Siobhán received a late stage, node positive diagnosis of Invasive Lobular Breast Cancer in December 2015, a mere 6 months after her routine Bi annual Screening Mammogram was reported as Clear.

Siobhán had never missed a Mammogram  in fact she had Screening Mammograms in 2011, 2013, 2015 – each one was reported Clear. She had questioned excessive pain during compression on her right breast in 2015, a note from the Radiographer was dismissed by the Radiologist – Siobhán was to discover this years later. It was also to be 4 years post Diagnosis before a Radiologist Expert Opinion would inform Siobhán that she had Very Dense Breasts. This they said was a significant factor in her Delayed Diagnosis and why Radiology Screening Mammogram had not seen her growing Tumour.

Invasive Lobular Breast Cancer accounts for 15% of all Breast Cancer. It is a slow growing subtype, yet Siobhán’s surgeon told her it had likely been growing for 6 – 8 years and should have been picked up at around 1.cm had she been recalled for additional Imaging. Her tumour was approx 4.cm in June 2015 when it was missed on her final Screening Mammogram and had doubled to 7.cm in December 2015 when Siobhán asked for further imaging because of nipple inversion she observed while on holiday. By then it had spread to her Axillary nodes and Internal Mammary nodes. Four months of toxic, nautious, Chemotherapy, followed by a full Mastectomy and Axillary Node Clearance and 30 rounds of Radiotherapy filled the year ahead.

Thus began a quest to understand what had gone wrong. There was no history of Familial Breast Cancer and a long history of Clear Mammograms. Why had all her Screening Mammograms failed to pick up her growing Tumour. One day reading an online US article about Mammographic Breast Density, Siobhán realised that women in Ireland are not notified about it or assoc risks –

Breast Density is an Independent Risk Factor for developing Breast Cancer – in fact it is a bigger risk than Familial History

Women with Dense Breasts cannot rely on Screening Mammograms alone and should be appropriately informed and yhen offered additional Ultrasound Imaging, MRI for women with Extremely Dense Breasts. More information can be found on http://www.beingdense.com including links to the latest European Recommendations from The European Society of Breast Imaging – March 2022 https://link.springer.com/article/10.1007/s00330-022-08617-6

So last week this happened ⬇️

I was invited to speak at #IWCP2022 International Cancer Prevention Institute in beautiful Pollone in Italy on the topic of Breast Cancer Screening and Breast Density – from a Patient perspective. ‘The Patient Effect – Changing the narrative around Breast Cancer Imaging” The welcome I received was tremendous, European Researchers, Clinicians and Pharmaceutical Representatives in the audience, with Principal Investigators from several major Cancer Laboratories across Europe and their Early Stage Researchers too.

I was taken completely by surprise when Organiser Professor Cathrin Brisken from The Institute presented me with their #ICPI 2022 Award – A Lifetime Achievement Award in Cancer Prevention – for outstanding contributions in Patient Advocacy and for improving diagnostic imaging for breast cancer patients.

Utterly proud beyond words!
To the entire CancerPrev Community and The International Cancer Prevention Institute run by Professor Cathrin Brisken and Professor Gian-Paolo Dotto, I owe a huge debt of gratitude. To all the wonderful Early Stage Researchers, the many Principle Investigators, Giovanna Chiorino, George SFLOMOS and everyone involved, you have made me a very happy and very proud Patient Advocate

I’ve spent several years advocating for Education and Awareness around Breast Density and associated risks posed by Lack of Notification and Inadequate Screening for Women with Dense Breasts. I’ve been cautioned here in Ireland and advised to stop. It’s been said I was ‘upsetting’ people and should refrain from advising women to request their Breast Density and seek further imaging.

This award is real recognition for the voluntary work of Patient Advocates everywhere, we do make a difference, we will continue to, because we’re not finished yet! Collaboration with our Research partners is so valuable and we learn from each other.

There are new European Recommendations from EUSOBI (March 2022) for all European Women to be Notified about their Category of Breast Density and then also offered additional Breast Cancer Screening by Breast MRI or Breast Ultrasound WITH Mammogram for Women with Extremely Dense Breasts – together we will ensure this happens!

So grateful to everyone in #Pollone #CancerPrev #2022 #Breastcancer #ResearchMatters #BreastDensity #WomenInScience #PatientsMatter #PatientsInvolved
#Densebreasts #earlydetection #BeingDense