For nearly a year now, I’ve had it in my mind that I would like to start a series of interviews featuring women who have overcome traumatic, life-changing or debilitating life events to thrive in a world where the odds were stacked against them. Ever since my miscarriage last March, so many inspirational women have come forward to tell me about the hurdles that they have faced and provided insight, guidance and solidarity at a time when I needed it the most. As soon as I heard Lauren’s story about her BRCA mutation diagnosis and the subsequent challenges she faced, I knew that I wanted her to feature as my very first Women & Resilience interviewee…
My first interaction with Lauren was purely business-orientated. I was working with her to promote Little Sleep Stars, her gentle sleep training business, and with her calm guidance and knowledgeable support we made some incredible advancements in Sophia’s nighttime sleeping in just a few days (you can read about our experience here). It was in the middle of this process that I had my miscarriage, and as we were talking so regularly and she was so warm, I opened up to Lauren about what I was going through. Little did I know at this point that she herself was experiencing a life event of a far greater magnitude.
Her resilience and bravery shines through in everything she does and when she did finally open up to me, I was left in awe of what this woman had been able to achieve as an entrepreneur, a mother and wife, all while battling one of the most difficult diagnoses and subsequent life decisions that a woman could face in her life. Read on to find out more about what happened after she received the life-altering news that she carried a BRCA mutation.
Tell us a bit about yourself, your family and what you do
I am a 38-year old mum of one wonderful little boy, Harry, who is about to turn 3. I live in the beautiful Yorkshire countryside with my husband and son. For many years I was a lawyer specialising in criminal law but in 2017 I retrained as a child sleep consultant, left my legal career and have been helping tired families ever since!
What is the BRCA mutation and how did you first find out that you had it?
OK…this is my layperson’s understanding but here goes! We all have BRCA1 and BRCA2 genes. When working properly, they repair DNA damage to cells and, crucially, surpress the development of tumours. We have two copies of each gene – one inherited from each of our biological parents. The one I inherited from my mum is defective, which means by body can’t repair itself as well as it should be able to. This makes certain types of cancer, most notably breast and ovarian, more likely to take hold if the DNA in the cells of those areas become damaged. So, a BRCA mutation doesn’t cause cancer, but it makes my body less effective at preventing it. My diagnosis came about because I switched to a new GP practice. As part of the registration process, I submitted a family history and the doctor asked me to check some aspects on my mum’s side. Having previously thought my great-grandma had died of cervical cancer, I learned it was, in fact, ovarian cancer – the same disease that killed my grandma. On that basis, I was referred to the genetics clinic and, ultimately, offered genetic testing.
Can you explain to us the medical procedures and precautions that you have undertaken since becoming aware that you’re a carrier?
Initially I met with a gynaecological oncologist and a breast surgeon. I had an internal ultrasound to look for anything of concern on my ovaries and a blood test as ovarian cancer sometimes throws up a blood marker. Both came back clear but I was advised that the screening currently available in relation to ovarian cancer often fails to detect the disease. Breast-screening is, thankfully, more effective and I was offered an MRI. Unfortunately, this couldn’t take place for a number of months as I was still breastfeeding my son when I received my BRCA diagnosis. I didn’t want to bring that to end solely to have the MRI – with everything else that was going on, that connection with my little boy was one thing I wasn’t prepared to surrender. I was relieved when the result was also normal but notwithstanding this, and after lengthy discussions with the specialists, I chose to undergo risk-reducing surgery. This was in the form of a full hysterectomy with bilateral salpingo-oophorectomy (removal of my ovaries, fallopian tubes, womb and cervix) in September 2007. This was followed by a two-stage double-mastectomy and implant-reconstruction which was completed in July 2018.
This must have been a very difficult decision to make. Would you mind talking us through what was going through your mind when faced with the decision of whether or not to go ahead with the procedures?
The decision to have surgery was simultaneously the hardest and easiest of my life. It’s very important to say that my decision isn’t the one that will be right for someone else – but it was right for me, and I knew it very early on in the process. By nature, I am fairly risk-adverse and a worrier so I knew that, even with the increased screening I was offered, I would never be able to relax. I also struggle with things being out of my control. Choosing surgery enabled me to take back some power in a situation where initially I felt I had none. Whilst statistically breast cancer was the bigger risk, it was actually ovarian cancer that worried me more. The memory of my grandma battling the disease when I was ten drove a primary instinct to protect my son from witnessing the same – no matter what that involved going through myself.
How has this experience as well as the changes to your body affected your everyday life?
I was worried about the scarring more than anything but actually that’s not affected me as much as I thought it would – partly because it’s not as extensive as I feared but also because I view my scars as the evidence of possibly the most unselfish choice I’ve ever made. And actually, because I had implant-reconstruction, the effects of gravity and breastfeeding have largely been eradicated and I can now wear all sorts of things that I wouldn’t have been able to pre-surgery! The abrupt onset of the menopause has been hard but again, not quite as bad as I expected. Many physical symptoms such as hot flushes were brought under control pretty quickly when I commenced hormone-replacement therapy. Some of my other symptoms are taking a little more time to fully-manage and have required referral to a menopause specialist but I’m fairly pragmatic and able to rationalise that I chose this course of action and knew there would be challenges – and none of it is anywhere near as bad as having cancer. Whilst my body is undoubtedly different to five years ago, it has grown and sustained a child and looks the way it does because I chose to do everything I could to make sure my son has his mummy. I focus on those thoughts when I catch sight in the mirror of how my body has changed.
What’s the future prognosis that you’ve been given now? Are there any additional cancer risks that you will need to look out for?
As I don’t have ovaries there isn’t any risk of ovarian cancer! There is an increased yet still very small risk of something called primary peritoneal cancer. This is because the cells of the peritoneal lining, which covers our internal organs, develop from the same cells as ovarian tissue. I also have an increased risk of pancreatic cancer which is the one that worries me most as, like ovarian cancer, there is no effective screening and survival rates are low due to typically late diagnosis. In good news, my breast cancer risk has been reduced to below that of a woman with fully functioning BRCA genes – my risk isn’t zero as small amounts of breast tissue remain but it has been reduced by around 95%.
What advice would you give to anyone who has a family history of BRCA mutations?
A BRCA diagnosis is tricky because its affects family members as much as the individual. My mum and I were the first ones in our family to be tested so then we had to inform relatives of the results which meant giving people we love information they perhaps didn’t want to know. Those in BRCA families have to walk a tricky line between respecting other people’s choices whilst making the decision that is right for them.
I’ve read that some physicians believe there is a link between BRCA mutations and intelligence, and that they could actually be an evolutionary advantage – what do you think about that one? 🙂
I’ve never heard this but I really hope it’s true – there has to be some upside after all! On a more serious note, I understand that researchers are interested in carriers of the mutation who don’t develop cancer to understand whether there is a reason for this – something that their body does to counteract the BRCA mutation. If there is and it can be recreated, that’s potentially huge for cancer-research.
What are your top 3 tips for anyone going through a traumatic life event like this?
1. Trust your instincts
People seem keen to tell you what you should do or how you should feel when you are going through something like this. Whilst it’s good to consider the views of those close to you, no one knows you like you know yourself and that may mean making a decision that others don’t agree with.
2. Target small milestones
Sometimes the whole picture is just too overwhelming to process. Instead of focussing on all the things I couldn’t do during my recovery period, I set goals to achieve the things I could – even if my plan for the entire day amounted to no more than having a shower and cleaning my teeth!
3. Embrace the positives
It might not feel like it when you are in the thick of it, but there will be positives to take from the experience. When we are pushed beyond what we thought was our limit, we discover aspects of ourselves we didn’t know existed. Trauma undoubtedly changes us and we will feel that we have lost something – but in time, we can often see other things that we have gained.
Favourite positive quote?
I have two prints on my wall that I bought on my BRCA journey. One reads, “Stars can’t shine without darkness”. The other is of the lyrics of a Brandon Flowers’ song which contains the line, “Have yourself another dream, tonight” – this experience has taken away some of the options I thought I had, most notably having another child, but it’s opened my eyes to other possibilities I might never have considered.
What have you taken from this experience?
I view life differently now and have made a number of significant changes as a result. I was approaching the end of my maternity leave when I received my BRCA diagnosis. I had already arranged to extend my leave and as the reality of my test results sank in, my priorities began to shift. I became increasingly interested in child sleep – a subject close to my heart being mum to a little one who did not sleep well for the first year of his life! And so, I handed in my notice, retrained as a child sleep consultant and, after a period sitting within an established consultancy, launched my own business, Little Sleep Stars which helps families find their way back to sleep using gentle and holistic methods. I love the work that I do and as my own boss I am able to manage my workload so that I get to see a lot of my own family. We have also moved out into the countryside within the last year and are in the early stages of renovating our cottage. I don’t think we would have made these changes but for the perspective this situation provided. I have learned that I am stronger than I thought, braver too, that I can accept help when I need it but that I can also hold myself together through difficult times and come out the other side – battered and bruised perhaps (quite literally in this case!) but still moving forward.
Catch my Women & Resilience series on the last day of every month, where I will be interviewing inspirational women who are thriving in a world where the odds are stacked against them.