Having a mastectomy and my ovaries removed was so difficult, but I didn’t want my kids to grow up without a mum

I didn’t want to think about my genetic risk until I was older

When I was in my late teens, I was in touch with a genetics team who told me that my mum may have had a genetic mutation, and that I could be tested for it when I was older. I remember thinking that I did not want to know at that point. I didn’t want it hanging over me.

At 22, I met my now-husband, and I started to think more about my genetic risk at that point. A couple of years later, when my eldest son was born, I felt that I needed to know.

I had a few meetings with a genetics counsellor to prepare me for what I was going to find out and the implications that a diagnosis would have on my life. When the time came to get the test, I was quite unemotional and matter-of-fact about it.

However, when I heard the words, "I’m really sorry, but the test has come back positive," I just cried.

I don’t think I was fully prepared for my mastectomy

I was only 25 at the time, so I felt that I had some time on my hands. I knew I wanted more children and that I wanted to breastfeed them, so I didn’t want to rush into having a mastectomy.

I went on to have 2 more sons, but things unravelled when Seb, my oldest, turned 9: about the age I was when my mum died. All I could think about was how he could be left without me. It became unbearable.

I was referred to a psychologist with the breast care team to discuss how any risk-reducing procedures would change my body and how I would feel about it.

Now that I am on the other side of everything that’s happened, I don’t think I was fully prepared for it, but I was always certain that I wanted to go ahead with the mastectomy. I thought I would be fine – and I am fine now – but it was a really difficult year. I felt like I’d lost part of who I was, and I needed counselling afterwards.

I think I also went back to work too soon afterwards. I told myself that nothing was wrong with me; I didn’t have cancer, but I had undergone a massive operation to prevent cancer. It wasn’t a good mindset to have.

I researched all I could before undergoing any treatment

As well as having a mastectomy and reconstruction, I had my ovaries removed.

I’d read that ovarian cancer can be quite difficult to diagnose as it often presents quite late. After investigating some gynae symptoms and finding I had a polycystic ovary, it was too much to bear. Every twinge made me think I was dying.

I went to the gynaecologist and said, "You have to take them out!"

I didn’t read up about the procedure and its effects until it was time to have it and, when I did, I had a moment of thinking, ‘What am I doing?’ I considered going for regular scans instead, but worried that something might happen between appointments.

I spoke to my husband about it and he said, "You know what you need to do, and we will do it together."

I researched supplements, I read the Menopause Doctor’s book and I listened to podcasts. I made myself as informed as I possibly could be. I wanted to be able to speak to the doctors with an understanding of what was happening.

Once I’d had the surgery, I asked for HRT patches. I didn’t want to be 34 and having hot flushes and brain fog, but my consultant didn’t understand my anxiety at first. However, being a nurse, I’m not easily turned away, so I persisted. Knowledge really is power in these situations.

I feel guilty that my kids might have the BRCA1 gene mutation

After everything, I still live with a lot of guilt that I carry the gene and might have passed it on to my children. There’s a 50:50 chance.

When I was told that I was BRCA1 positive, no one talked to me about IVF gene selection. I think, if they had, it would have been something that we would have carefully considered in order to eradicate that risk.

The decisions I’ve made recently have always been for my boys. Even having my ovaries out, which I considered cancelling, I would do over again a thousand times - because I don’t want them to have to go through what I went through.

I want to grow old. I want to live a long time. I want to watch them grow up and have their lives. Whatever that looks like, I want to witness it. I am so sad that my mum only got 40ish years on earth. It’s not a long time.

I’m not sure my kids are aware of everything I’ve gone through. When I came home after my most recent operation, my middle child didn’t even look up! My eldest said, "All right mum?" and I said, "Yep, fine!" Life just carries on.

I hope one day they acknowledge what I have done to try and be here for them and for myself.

But, as difficult as all of this has been, I know I have come out the other side of everything a more authentic person. I’ve done what I can to be able to live and thrive, so now I need to actively make the best of the situation.