This month’s social spotlight is shining on Siobhán Freeney – a tireless advocate for lobular breast cancer and the associated breast cancer risk with breast density.
Hi Siobhán, I’d like to start off by asking you to share with us your path to patient advocacy. What set you on this path?
SF: I was diagnosed with Stage 3C Invasive Lobular Breast Cancer in December 2015. I really struggled with my diagnosis because I had no family history of breast cancer. I’m very Breast Cervical Screening aware – always attended for my mammograms and only had a clear mammogram 5 months earlier. I noticed that my right nipple was inverting ever so slightly and requested an immediate referral from my GP. My diagnosis was immediate following a Triple assessment. There was no ambiguity about a forthcoming mastectomy, which would follow after four months of dose-dense chemotherapy.
I have always had an inquisitive mind and so when I was told by the Breast Nurse not to Google, that’s exactly what I didn’t do!!! I quickly discovered there was a lack of information about Lobular Breast Cancer. Thankfully this has improved, mainly due to Patient Advocacy Groups who have begun to engage with researchers and clinicians in raising awareness.
Around the same time I was diagnosed, I came across an article on Breast Density. I was completely blown away by the statistics on associated breast cancer screening risks from AreYouDense.com and the wonderful woman who started the Grassroots Breast Density Advocacy Group in the USA, Nancy Cappello.
And then you set about educating women in Ireland, where you live?
SF: Yes, I set up www.beingdense.com in Feb 2016. The purpose was to inform (Irish women in particular) women, about the Breast Cancer risks associated with having Dense Breasts.
- Breast Density is an independent risk factor for developing breast cancer. Women with the densest Breasts are four to six times more likely to develop breast cancer.
- Mammograms are less likely to find early breast cancers in dense breasts. Mammograms miss 50% of breast cancers in the densest breasts.
It is not palpable and has nothing to do with size or shape. Mammographic breast density is considered to be a woman’s personal biomarker for cancer and can only be determined by a mammogram.
Related Reading: Breast Cancer Survivor Knew Something Was Wrong WIth Diagnosis
How is breast density assessed?
SF: The radiologist who reads your mammogram can easily see how dense you are.
Breast Density is assessed using 4 levels
A Mostly Fatty
B Scattered Fibro glandular
C Heterogeneously Dense
D Extremely Dense
In the UK and Ireland, women are NOT routinely notified when their mammogram determines that they have dense breasts.
That lack of awareness must have shocked you. Is that when you started using social media to raise awareness?
SF: Yes. I began sharing research links and building awareness on FaceBook initially at https://www.facebook.com/breastdensityreporting/
In retrospect, I was quite sheepish about patient advocacy at first, I didn’t want to upset the status quo too much. I’ve learned that education and knowledge are the foundation blocks for change and great advances never come from comfort zones.
That’s so true! Your website Being Dense is now well-established as Irelan’s breast density awareness and education site. What other things have you achieved since setting up the site?
SF: In 2019 we co-hosted the first-ever mammographic breast density seminar in The Royal College Of Surgeons. This year I took part in the Marie Keating Foundation #NotJustPink Campaign for October. Last February I spoke at a favourite event of mine, Choirs For Cancer in UCD, organised by Precision Oncology Ireland.
I’m a founder member of Lobular Ireland www.LobularIreland.com This has been a real passion of mine. Invasive Lobular Breast Cancer is the sixth most diagnosed cancer in women and the second most common subtype of breast cancer. Lobular Ireland is a growing advocacy, interacting with researchers, clinicians and breast cancer organisations. Lobular is my subtype of breast cancer and I’m keenly aware of the lack of research that has been carried out until very recently. Patient advocates have proven to be a powerful tool in raising awareness and collectively can really bring change.
I was awarded a scholarship to travel to the 2nd Lobular Breast Cancer Symposium in Pittsburgh, USA this year but Covid had other plans and unfortunately, the event is postponed until 2021. Meanwhile, we engage and collaborate with the Lobular Breast Cancer Alliance. At the end of September, Precision Oncology Ireland agreed to support Lobular Ireland and together we held a very successful webinar with the amazing ILC Expert, Professor Steffi Oesterreich from @UPMCHillmanCC.
I’m also involved in AIS Advocates in Science with Susan G Komen and participate as much as I can. In my spare time, I studied with the IPPOSI Patient Training Program and graduated with 25 other like-minded advocates in November 2019.
Another platform I’m very involved in is the European Lobular Breast Cancer Consortium http://www.ELBCC.org. I’m the Irish patient advocate to the Consortium. There are several European Countries involved with leading scientists, epidemiologists, pathologists, lobular researchers and patients working together to enhance awareness, improve screening methodologies, fund lobular specific clinical trials and treatment options for invasive lobular breast cancer. I attended their 3rd Annual meeting, in Leuven and we have just had our first virtual meeting.
You’re certainly kept busy with your advocacy work. When it comes to social media, which platforms do you like to use?
SF: I enjoy using both Facebook and Twitter. I have a different following on each. I find FB great for patient advocacy support and building relationships with breast cancer community. I try to spend about equal amounts of time on both. I like to keep content fresh and interesting, evidence-based and factual.
It takes a lot of time to source and prepare content and make an effort to keep my breast density blog up to date too. Methinks I spend too much time overall, but I would really like to keep the momentum going for as long as I can.
My popular Hashtags for #BCAM2020 October have been are #IAmDense #TellWomen #IAmLobular #LivingWithLobular and #NotJustPink with The Marie Keating Foundation. I’m currently trying to get my head around Instagram @aboutbreastdensity, it’s a work in progress. Can I give a shout out to #LitlleGoalsBigWins Barbara Croatto @bcroatto a wonderful Graphic Design Artist who has just designed a new Infographic for BeingDense.com. I love it thank you.
You certainly can Siobhán. It’s a lot of work – and of course unpaid work. Patient advocates like you really are the unsung heroes of healthcare. Do you have time to take part in any Twitter chats on top of everything?
SF: I am so bad at participating in Twitter Chats, I always mean to make time and forward plan for them. It’s an area I would like to work on. There’s a lot to be gained from them, I know that from the ones I have taken part in. I spend an awful lot of time as it is on social media though as it is.
Twitter chats are great but you are already doing so much! I think it’s important that we don’t feel we have to be everywhere at once. It’s easy to get overwhelmed with social media and all its tools and platforms. Do you have any advice for someone starting out with social media?
SF: Be confident about your message. Know your audience. Keep it real. Take it slowly and post relevant content. It’s not a race to the finish, enjoy it.
I love that advice Siobhán – particularly the last part. So, I like to end these interviews with a favorite quote or saying. Do you have one you’d like to share?
SF: I have so many quotes in my head – I love using them.
Here’s one from Maya Angelou, a strong independent woman, a woman of integrity, someone I have always admired, greatly.
‘Without courage, we cannot practice any other virtue with consistency. We can’t be true, kind, merciful, generous or honest’
I love that quote and very apt – as I know you are a person of great courage, integrity and kindness.
If you’d like to learn more about Siobhhan’s work, visit her website http://www.beingdense.com Follow her on Twitter @breastdense.
This post is part of an ongoing conversation that explores how patient advocates, healthcare professionals, and researchers use social media to communicate their work. For more interviews, click here.