Empowering. That’s the best word I can use to describe my experience at the first ever Marie Keating Foundation Seminar for carries of a BRCA mutation on Saturday. The wonderful Roisin Prizeman, who was my confident in the early days, has poured her heart into ensuring this day came to fruition and what a day it was thanks to the help of Carla O’Neill in MKF.
To be in a position to spill my guts and share my story in such a safe space was therapy in itself for me. To finally be in the presence of so many women who “get it” was so helpful, calming and reassuring for me. I’ve often tried to describe the limbo that many BRCA carriers find themselves in, not a patient and not sick, it can be a lonely place to find yourself. But to say those words out loud on Saturday and to see so many reassuring nods from the crowd gave validation to my anger and my frustrations.
I was also moved and further empowered by the stories of strength and survival in that room. Women who are patients, women who are survivors and women who are fighting for a better future for their children, and their children’s children by constantly striving for better support for the 500 or so families in Ireland affected by this mutation. Those who are shouting for more resources, for streamlined services and for genetic testing for all with a family history of breast and cervical cancer.
I listened and I learned. I absorbed the energy in the room and I opened my eyes to struggles beyond mine. Women who were denied genetic testing and subsequently received cancer diagnosis; Women who had just given birth and started immediate treatment; Women who have young teenage daughters, all of whom have a 50% chance of inheriting this bloody gene and the guilt, worry and sleepless nights that brings trying to figure out how to have those discussions with the young women in their lives.
I was humbled. And I was grateful. Grateful for all of the lovely feedback from so many on the day and since. Grateful for the community of women I am a part of. Grateful for the friendship and the love in the room. Grateful for the opportunity to help even one young woman face this journey.
And ever so grateful to Dr. Sarah Mc Garrigle to hear that drinking wine (for BRCA carriers) hasn’t been proven to increase our chances of getting breast cancer! Woo! But we will take that with a pinch of salt and a glass of merlot while we decrease our overall calorie intake and increase our exercise. Even those who have been dealt a dodgy hand of gene cards can make changes to reduce their risk.
We also heard from Marie Keating CEO, Liz Yeats, that they would continue to commit their support in this area of their work. Michael Farrell opened the day by giving an overview of the genetics testing in Ireland and how the referral system works. This got a lot of attention from the attendees with many questioning how we select our eligible patients using the Manchester score and if there may be a better, wider net system. Dr. Liz Connolly, my own consultant, could have had a conference all to herself. Full of knowledge and undeniable passion in this area, I learned that there is no dedicated funding for screening BRCA carriers, her clinics are over subscribed and entirely underfunded but she sees the importance of screening high risk patients and despite not wanting to describe it this way, there is a definite cost benefit to the programme. Dr. Claragh Healy gave us an insight into the different reconstruction options on offer depending on the patient. I now gather I may not be eligible for the type of DIEP flap surgery I thought I might be able to avail of so it was great to see the next options if that was the case and good to start getting my head around it all. Dr. Ruaidhrí McVey gave the most frank presentation of the day when describing and showing film on how one performs an oophorectomy. We also learned that it’s now believed most diagnosed ovarian cancer in fact begins life in the Fallopian tubes and as such the most common procedure now is to do a bilateral salpingo-oophorectomy. The issue of HRT and the increased risk of other cancers remains a contentious issue and is very much patient specific. At the end of the day we heard from Amy Nolan that there will be a new online resource launching in May for those looking for support before, during and after their results.
But for me, the most insightful and thought provoking talk of the day came from Yvonne O’Meara, who discussed communication surrounding carrying a BRCA mutation. Her heartbreaking story of a best friend whose family members held the BRCA knowledge, but did not share “the secret” to the rest of the family struck a chord with many in the room. Carrying a BRCA mutation shouldn’t mean shame, it shouldn’t mean a dirty secret. It needs to be discussed within families so that all members have an equal chance to take their destiny into their own hands. How we discuss BRCA with younger family members and the timing in regards to young women be tested was something else that divided opinions on the day. However one thing is clear, communication is key.
What a day and what an amazing group of women. Together we are stronger for sure.