Leigh’s story: I had four breast surgeries in total.

As teenagers my sister and I we were told there was a possibility we had a breast cancer gene mutation. When we decided to be tested, one of my sisters and I were positive. Thankfully my other sisters were negative.

So with the guidance of my little sister I embarked on my BRCA1+ journey. I met with a counsellor and they gave me a suitability assessment to make sure I was making the decisions with a comprehension of what it entailed… truth be told I didn’t have a clue. 

I was 28 years old and as soon as I was given that positive result I felt like a ticking time bomb with a massive target on my back. 

My husband’s father had just lost his fight with cancer, I never heard him complain or moan. How guilty did I feel, considering I didn’t have cancer. Who was I to be scared or anxious of a test which only told me I was at risk?

Risk-reducing mastectomy 

I had four breast surgeries in total. This included a full mastectomy, with several procedures to reconstruct my breasts including implants and lipomodelling, where they take fat from other parts of your body and inject it into your breasts.

After one of my surgeries I was covered in bruises I looked like I had been tramped on by a herd of cattle. Although I was grateful, realistically I had just had my body mutilated. Not for a diagnosis but for a prevention. And weirdly I would do it 100000 million times over to give me longer with those I love. 

I healed beautifully and looked great but I am not sure I was ever the same person after that. Sex was different, the numbness in my breasts was something I didn’t ever consider.

A year later we were pregnant but our little baby wasn’t ready to come earth side so it left us just after 12 weeks. We were offered a type of IVF (PGD or PGT-M) where they would screen the embryo to make sure there was no BRCA genetics. I just thought it was far too clinical for me. I had been through so much medically I wanted this journey to be as natural as our bodies would allow. 

So broken hearted we tried again. We welcomed our rainbow baby in October 2019. We called him Louie James after the Papa we lost before their eyes could meet. Our daughter Sienna arrived safely and calmly in August 2022. Our family was complete.

After a camping trip on maternity leave I was really unwell. My right breast swelled up to almost double the size and it was red hot and really sore. I was so scared my luck had run out and this was that target on my back being hit. 

The Prof told me I had capsular contracture showing all the symptoms for ALCL my implants had to come out. I ended up in for surgery in the August.

I woke up and immediately felt panic. I got home and my anxiety didn’t ease. I cried at everything- I felt so sad and hard done by. Not grateful for this life-saving surgery but sad and angry for everything. I could not get out of my negative headspace and it took me weeks before I could truly say I felt back to myself again. 

Risk-Reducing oophorectomy

Then the next letter, for my risk-reducing surgery to remove my ovaries dropped 7th Jan 2025 right as I was about to start a new job and go back to work. I called them and explained it was only 4 months since my last op, could they give me another month before going under again. 

The surgery was in February, two days after my 38th birthday. I wasn’t in too much pain when I woke but I felt so sick. I needed to have a full incision as the keyhole wasn’t big enough to remove my ovaries and tubes.

I just kept asking to go home. I got my medication and there was no anti sickness- which I really need when taking codeine so we had to struggle and get hold of it after I was discharged.

A few days passed and a big dark cloud was sitting over me, it was like I was unmotivated for anything and nothing raised the corners of my mouth. I realised then it was oestrogen withdrawal and I went straight onto my HRT. The headaches were blinding and the nausea was horrible- so the anti-sickness was helping with that too. 

Six weeks post-surgery the only way I could describe it was going around with a feeling like I had a brain injury. My mind wasn’t firing on all cylinders and the abdominal pain and discomfort came in waves - like a stitch. 

There was a period of time since the operation when I really questioned my choices. Have I done the right thing? Why does nobody talk about this? Is this menopause? But realistically (and I am very much a betting man) the odds were against me. I wasn’t willing to gamble with my life so of course the surgery was needed. Otherwise the pain of leaving my children before I was ready would have destroyed me.

This has been a difficult journey. Putting pressure on myself that was completely self-generated. I am constantly thinking about everyone else’s perceptions. ‘When are you going back to work’ instantly puts the hairs on the back of my neck up because what I really want to say is ‘I’ll be back when I’m ready’. The turbulence in everyday activities is sending my anxiety into a spiral. I have to focus on the kids which takes it out of any able-bodied person, never mind someone recovering from two surgeries in the last five months.

People think it’s HRT that’s causing all these symptoms and I try to explain the HRT is fixing them. The problem is my body no longer has the source of hormones it needs - and my god it needs them. So women, please don’t put up with any symptoms, educate yourself in the menopause and don’t just accept it, you have a chance to balance your hormones before you become so different you don’t recognise yourself anymore. My menopause was surgical so it was instant and my god I have felt all the feels, rage, hurt, sadness and I am trying to adjust to my new normal. 

Eight weeks post-surgery now and I’m out in Spain getting some sun with James and the children. Nobody talks about the stress and division that comes between a couple when they are faced with difficult circumstances. Caring for someone in a dependent capacity isn’t glamorous, it’s hard when someone breaks their leg the world can see the stookie so it makes it so much easier to provide care and empathy to that person, but when it’s a withdrawal and the hormones are missing from your body you can’t show people the way you feel. So I have no shame in being out here trying to reconnect our family while I’m off work. We all need it.

Am I glad I had the surgery, of course I am. This was a conscious choice, one I bet lots of people with terminal diagnosis wish they had so for that I am unbelievably grateful. Has this choice been easy, absolutely not. In fact at times I have thought I was losing myself, spiralling and completely losing control. The last 8 weeks have taught me to stop trying to control everything but to live in the very moment. I often get ‘you are so strong’ ‘you are so brave’ but is it strength when you have no other choice? Is it bravery? I don’t have the luxury of avoiding any of this so I have to meet it head on. 

I won a competition to walk the Sahara desert in November with Coppafeel! The trip is 100km across 5 days. I have already smashed my fundraising target and it’s forcing me out for some time to and for myself which I so desperately needed. The trip marks the end of my 10 years of surgery it’s going to be an emotional trip as I complete the trek I can close the chapter of my preventative surgery journey. 

I am so proud of what I have accomplished through all of this. I am absolutely a survivor. Sometimes I think adversity pushes you out of your comfort zone and that’s when the magic happens and things in your life change for the better. I’m so appreciative of the people I’ve met in the journey and can’t wait to see where else it takes me. I hope I’m over the worst of it but I know I’ve now done everything I can to live as long and happy life as I possibly can watching my babies grow.

They will need testing at one point but I’ll be there sharing my experiences with them and showing them the way. I wish for them not to have the faulty BRCA1+ gene, to have passed that sentence onto my children riddles me with guilt but knowledge is power and they will grow up with all the information they need to make informed choices about their own body. Let’s just hope in 10/15 years when we are having those conversations that medical advances have made it easier to remove the risk from them.