Updated: May 24, 2021
I found out I was BRCA2 positive in January this year, after what had already been a challenging year. I lost my Dad in April 2020, just at the start of the pandemic and only a few months after he had been diagnosed with terminal liver cancer. It was not how I had imagined the death of a parent to be and grieving during a pandemic was hard. I've become quite fixated on grief in the past 12 months and will write a post about it soon, but I want to start this blog with bringing you up to date on where I am today.
BRCA isn't new to me. Without sharing too much personal information of family members, cancer hasn't been kind on my Dads side. Specifically breast cancer. Dad didn't die from an inherited cancer but I'm almost certain it contributed somehow. You see BRCA2 cancers impact men just as much as women and I wish I'd paid attention to this in my past.
For more information on BRCA this is a brilliant and informative starting point >> https://www.macmillan.org.uk/cancer-information-and-support/worried-about-cancer/causes-and-risk-factors/brca-gene
My diagnosis came about after a consultation with a menopause specialist back in November. Whilst discussing my symptoms which we agreed sounded very early stages of being peri-menopausal, she stated she was reluctant to consider me for HRT until we had the whole picture around my family history, specifically with breast cancer. The whole picture meant I needed to take the predictive genetic test which would tell me if I was a carrier of the gene. HRT and BRCA is complicated, but there is more and more research and evidence being published that can enable women to have the best information they can when making decisions. I really want this blog to educate and dispel myths around HRT and breast cancer, I'm not an expert but there are some incredible doctors working incredibly hard on this topic. Dr Louise Newson has published lots of papers >> link here which are easy to digest as a starting point.
After speaking to the specialist, my GP referred me to the breast clinic at Barts for an emergency mammogram (this was thankfully clear) and then to the cancer genetics team at Gt Ormond Street where a simple blood test was taken. In order to determine the outcome I needed to provide the specific genetic code that was prevalent in my family. Fast forward 4 weeks and the report came back that I was positive and was being referred to the genetic counsellors for a consultation. I'm glossing over the emotional rollercoaster I have been on, but finding out I was positive hit me like a sledgehammer. Emotions is a pretty hefty topic that I'd like to write about separately and give it the space it needs.
In my consultation the counsellor was able to detail the personal risk I had in developing breast and ovarian cancer over my life-time and what my options were, and to also refer me to the brilliant breast cancer clinic at UCLH under the care of Joanna Franks. This is a great webinar she hosted on risk reducing surgeries >> link here
Risk and Options
I have an 82% risk of developing breast cancer. The national average is 12%.
For ovarian cancer, fortunately my risk is low which has somewhat been enabled by taking the contraceptive pill for so long. Finding out I could keep my ovaries for the time being was a small victory.
The options presented to me were very simple. Have yearly scans or risk reducing surgery.
I want to be really clear about why I have opted for risk reducing surgery, this was not a decision I took lightly and I am currently having psychological assessments to make sure I fully understand what having a double mastectomy means. If any of you are strong of stomach and want to google mastectomy then please do - it is not a boob job by any means!
My main priority is my family & friends. I love my boys, husband, mum, brother and friends very much and want to be as healthy as I possibly can be for them. The risk of developing a cancer that hasn't been kind in my family is too high. 82% is the higher end of the scale for BRCA2, and honestly the question I asked myself is "why wouldn't I?" I am incredibly fortunate that the NHS considers inherited cancers to be serious enough that I have been gifted this privilege to reduce my risk to less than 5% - the cost of this however is huge. A bilateral mastectomy with reconstruction is no joke and the ripple effect of my diagnosis is emotionally quite hard to deal with at times. Also, who knew there were so many different mastectomies to choose from! Once I've met with my plastic surgery team, I'll write a post on the mastectomy I'm allowed to have; I know what I want and am manifesting hard for it, but the universe has been a bit of a bastard lately, so I'm trying to not get my hopes up.
So this blog is going to really act as a diary for me. To inform friends and family on what's happening as I meet consultants and surgeons this year. To educate, inform and breakdown barriers of preventative surgery, and to shine a light on BRCA, fitness, menopause, body-confidence and much more.
Thank you for reading, much love.
ps - just mentioning again, a mastectomy is not a free boob job :-)