“On Valentine’s Day 2019, I was sitting in Arrivals at Auckland Airport. It was 5am and I was staring vacantly into space, clutching an almond milk latte in a takeaway cup. I had flown halfway across the world, all alone, just three months after undergoing a double mastectomy. Was I petrified? Absolutely. But it was something I felt I had to do to reclaim some part of me; to travel as far away from home as possible so I could return to myself again.
I discovered I had inherited the BRCA1 gene back in September 2017. It's a genetic mutation that comes from my father’s side - but it was my mum, a chemotherapy nurse, who first had the inkling I might have it. Cancer had become an unwelcome guest in my family; my late, brave and brilliant auntie was diagnosed with both breast and ovarian cancer at a young age. This can be a clear indicator of a BRCA mutation, and my mum intuitively felt that it may run in our family. She advised going to my GP to ask for a genetic test, and after being turned away three times, I was finally referred to a genetic counsellor. Having watched someone I love fade away to cancer at such a young age - and knowing that I, too could face the same fate - drove me keep pushing for the referral.
Being tested for the genetic mutation is simple, involving a straight-forward blood test. It was the anxiety-ridden six week wait for the results that proved far more painful. As I entered the office of the genetic counsellor, Mum in tow, to hear the result, I naïvely believed it would be as simple as hearing I had nothing to worry about. I was certain I'd be able to skip back to my normal twenty-something life, with nothing more to worry about than whether I could afford another bottle of Sauvignon Blanc at the pub.
I'll never forget the moment my genetic counsellor said the words, "I’m sorry to say that you have inherited the BRCA1 mutation." I retreated into myself as words like "double mastectomy" and "MRI screening" floated around me.
We thanked her as we left, and headed to a coffee shop near Saint Paul’s Cathedral, sitting outside in a daze as the autumnal sunshine beamed down around us. "I feel like everyone knows" I told my mum, feeling as if the news I had just received was shining out of me like a giant scarlet letter. Mum clutched my hand in solidarity, whispering: “Whatever happens, we’re in this together."
The BRCA gene is "an important gene involved in the repair of DNA," explains Professor Gareth Evans from the NHS Foundation Trust at Manchester University. "When BRCA1 is faulty, the cells cannot repair DNA accurately. This leads to accumulation of genetic damage, particularly in the breast and ovaries, leading to cancer. Overall a woman with a faulty copy of BRCA1 has a 40-60% risk of ovarian cancer and a 40-90% risk of breast cancer," he tells me. It's this sky-high likelihood that caused my world to completely flip in one short hospital appointment. To be so acutely aware of your own fallibility is galling. I felt different from everyone else; vulnerable.
In terms of managing my risk, I had two options. I could opt for yearly screening or I could take the more extreme route of preventative surgery. There was no knowing how high my personal risk was on the generic percentage scale, but for me, even a 40% risk of developing cancer felt overwhelmingly uncomfortable. The invincibility that comes with youth had disappeared for me, and all I could think about was my own mortality.
Everything else I worried about paled into comparison because my future felt so uncertain. One thing I knew was that if I buried my head in the sand and chose to ignore my result, there was a very real chance that I could die at a young age. Nothing can prepare you for that sort of anxiety. Even when I tried my best to ignore it, intrusive thoughts about my risk would reverberate around my mind. My relationship with my boobs changed almost overnight, as I began to feel like they were conspiring against me. They were two ticking time bombs attached to my chest that would one day detonate. For me, a yearly scan felt too passive, as if I was waiting for the inevitable: for cancer to catch up with me. So I decided to have the preventative surgery.
Although I felt lucky to be able to face cancer as a risk and not yet a reality, deciding to have a double mastectomy at 25 wasn’t easy. I quit my job, moved back in with my supportive mother, and tried my best to mentally prepare. I worried about how I would look post-surgery and spent hours just staring at my boobs in the mirror, feeling simultaneously disassociated from them and devastated at the thought of having them amputated. I was so conflicted; on one hand grateful to be able to avoid breast cancer, but on the other, painfully unlucky to have to lose a part of Throughout all this, I was newly dating someone. How do you tell someone you’re seeing that you’re about to have your breasts surgically removed? I thought to myself. It felt almost farcical. After some beers one evening, I mustered up the courage to tell him. A few days later he surprised me with a 'Boob Recovery Kit' full of everything I’d need for surgery - from a hard-drive full of movies to mint tea bags and lavender oil. I was warmed at his reaction. The generosity of my inner circle continued to astound me, too, as I was inundated with support and love from my best friends and family.
My surgery fell on 1 November 2018 and, before I knew it, I was sitting on a hospital bed with a taped-up nose ring and fetching green circulatory socks. In no time at all I was being wheeled down to theatre. The incredible surgeons worked over four and a half hours to remove and reconstruct my breasts. My breast tissue and nipples were completely removed and then my pectoral muscle was lifted, with silicone implants placed underneath. I couldn’t be more thankful for our NHS and the wonderful care I received, but anyone that says a double mastectomy is a free boob job couldn't be more wrong. I was left in otherworldly pain, had lost all of my upper body strength and couldn’t even sit up without help. I was given a cocktail of drugs and my mum had to help me do absolutely everything. It was the most humbling experience of my life.
Slowly, I started to make progress, but coming to terms with my new body was difficult. It took me two weeks to even be able to get out of bed unassisted. I had long drains coming out of each of my sides collecting excess blood. These weren’t removed for a week and were the most painful part of the whole process. After around four weeks, I started to regain slight independence and managed to walk into town and wander around solo. All was fine until I got stuck in Debenhams because I didn’t have the strength to open the heavy double doors. I had to stand in the foyer and wait for someone to come in and hold the door open.
When the bandages first came off, I stood dumbstruck in front of the mirror, staring at my round, numb and nipple-less boobs. They looked more like Barbie’s than my own. I had taken the choice to remove my nipples; leaving them behind would have increased my risk because they could potentially still have cancerous tissue on them. I can have them tattooed on in future, but for now I'm choosing to focus on the positive of not having to worry about a nip-slip when in a bikini.
Making the decision to have the mastectomy was the most difficult thing I’d ever had to face, but knowing afterwards that I had reduced my risk of breast cancer by up to 98% felt nothing short of miraculous.
I decided that as soon as I was well again, I should challenge myself to do something equally as terrifying, but this time 100% more positive. I wanted to get away from all things cancer and go and see the world completely alone. I wanted to figure out who I was without my breasts, and to prove to myself that I hadn’t changed. I could still be free and have fun despite having this setback. My surgeon confirmed that I could fly three months post-surgery so I took her advice to heart. Using savings I'd amassed from working three separate jobs in the lead-up to my surgery, I booked a flight to New Zealand for just under 15 weeks after the operation. I didn't want to wait any longer to live my life to its fullest - for myself and also for the women in my family who didn't get the chance to save their own lives.
I spent five months travelling alone. My travels took me from New Zealand to Australia and then on to Bali and Vietnam, finishing in Thailand. I travelled solo and met people from all over the world. I hiked the Tongariro Crossing, one of the hardest day hikes in New Zealand, just 18 weeks after I woke up in my hospital bed unable to even reach for a glass of water.
It was poignant moments like that which made everything feel worth it, and made my body feel like my own again. Although there were times I was held back physically (a lack of range of motion in my upper body means I still can’t swim), I felt so proud to have pushed myself.
Where cancer is concerned, I am not 100% out of the woods yet. I still have the ovarian cancer risk to face, but that's not something I have to think about until my mid-thirties. For now, I am 26 years old, about to move in with my partner (I knew the man who gave me the 'Boob Recovery Kit' had to be a keeper) and I’m surrounded by the continuous support of friends and family. I feel so lucky to have discovered my risk, and that I had the opportunity to free myself from it. Losing your breasts isn’t the end of the world; in this case it's hopefully signalled the beginning of a long and beautiful life, free from the anxiety of breast cancer.”