Gorey woman behind global community for breast cancer patients
Siobhán Freeney, who lives in Gorey, started the blog Beingdense.com in 2016 which focuses on connecting a global community of women who are breast cancer patients or survivors of the disease, or those who want to be on the look out and find out more, aiming to raise awareness about women knowing their breast density and how it can relate to breast cancer being detected.
In Ireland, more 40,000 new cases of cancer or related tumours are diagnosed each year.
Siobhán is involved in patient advocacy, and her overall goal is to one day see screening programmes that will make it something of the everyday when it comes to checking for breast density, but also encourage further dialogue of this kind around women's health.
Siobhán explained that further research has been done overseas, in the likes of Canada, the USA and Australia and this is how she first discovered the issue and got involved in the area in late 2015.
It was then that Siobhán had a first been diagnosed with having breast cancer, started into chemotherapy and later had a mastectomy.
'For anybody, having a diagnosis of cancer, it just turns your world upsidedown. I had family support and a great medical team, but I was told, like everyone, not to Google my illness when I got home. But I'm inquisitive, I didn't want to just hand myself over,' said Siobhán.
She explained that after spending a month or two getting into online research, she knew she was on to something when she came across the work of the late patient advocate, Nancy Cappello from the USA around breast density, who managed to change FDA regulations in her own state.
'Until then, I had never heard of breast density and I soon discovered that most, if not all women in my work place and social circle hadn't either,' said Siobhán.
Siobhán will be taking part in a public seminar and panel discussion, on Monday June 10 from 5 p.m. to 7.30 p.m. titled 'Mammographic Breast Density, what women need to know'.
The event is being organised by Breast Predict, a university-based research group that is supported by the Irish Cancer Society.
Speakers will include Prof. Fidelma Flanagan of BreastCheck, Dr Maeve Mullolly of the RCSI and Canadian doctor Paula Gordan, from the University of British Columbia, and together they will highlight the issue to raise public awareness.
'We want to have an open discussion, Siobhán approached us and we want to see if breast density could be considered in screening going forward. The fact that women with more glandular tissue than fat in the breasts are four to six times more likely to develop breast cancer, is a risk factor apart from the masking affect,' said a spokesperson for Breast Predict.
Breast tissue may be called 'dense' if you have a lot of fibrous or glandular tissue and not much fat in the breasts.
Having dense breast tissue is common, but breast density is seen only on mammograms.
'Breast density is significant because the sensitivity of mammography to detect breast cancer is significantly reduced in women with dense breasts, as both cancer and density show as white on the radiographer's screen,' said Siobhán.
'I started my blog at home to raise awareness. I'm not a medical or scientific person, I was trying to do it all under cover. But I realised I wasn't on my own, and this has really grown and since February this year the interest has increased tremendously,' she said.
In May, the Irish Cancer Society announced funding of €30,000 for patient advocacy work, involving the voices of cancer patients to be present within the scientific research process.
'Its main aim is to enable dialogue between patients and researchers, scientists, funding bodies and patient advocate groups so that the lived experience of cancer patients can enrich, inform and shape the research process,' the society said in a statement.
As dense tissue can only be detected by mammogram, Siobhán's concerns lie in that fact that women cannot feel for their level of density, and that free breast check screenings are only for those aged over 50, leaving younger women at risk.
'If you want to catch it, you want to know it's there. I've been happy with the service I've been provided by BreastCheck but I would like to see this being taken into consideration.'
'I hope the seminar will get a real conversation going, as we've a great opportunity here. I want to know if we are going to take a lead on this, and whether there'll be investment on what they're able to do in their existing structures, but also what they'll be able to do in five years time'.
Siobhán explained that personal invitations are being sent to both consultants and political leaders.
'Minister Harris will be invited as well as the Oireachtas Health Committee,' said Siobhán.
'We will have to wait and see what BreastCheck are willing and able to do, but there's a greater appetite than ever for this.'
Siobhán believes that further work must be done in Ireland around more personalised risk assessment, and it is important to have regular mammograms, as she would advise any woman to discuss any concerns they have with a medical expert.
In Gorey, Siobhán has been active with Gorey Tennis Club, Gorey Little Theatre and Courtown Golf Club as well as the Hope Centre, having raised her two sons James and Kevin with her husband Paul here.