I was only 44 when I had my breasts removed to reduce my risk of cancer

When I arrived at the hospital back in September 2014, my grandfather was resting in bed. Mum didn’t seem herself. Quiet, nervous.

Even when she told me she was fine, I could tell she was keeping something from me.  

My grandfather had just been diagnosed with breast cancer. He’d been in for a scan for something else and they’d discovered a lump in his breast and he’d just had it removed. 

Perhaps the outlook wasn’t good?  

When my grandfather opened his eyes, he turned to Mum. ‘Have you told her?’ he asked. Mum glared at him, told him to shush but it was too late. I’d heard. 

‘Told me what?’ I asked. She looked at me uncertainly and my mind began to race with worry. 

‘You have to tell me now, whatever it is,’ I said firmly. ‘I’m 36, I can handle it.’  

‘I didn’t want to say anything until I knew for sure,’ she explained. ‘Because it’s so rare for men to get breast cancer, the doctors have advised me to go for genetic testing for the BRCA gene.’ 

This was the first time I’d heard of the BRCA gene, but it certainly wouldn’t be the last.

All women have BRCA1 and BRCA2 genes, but only some have mutations that result in a higher risk of developing breast cancer or ovarian cancer.  

I went away and did some research. From being this carefree person, I suddenly started to worry about getting cancer and looking at my breasts thinking I could see lumps and changes. 

I was offered counselling but didn’t take it. I’ve always been someone who handles difficult situations by shutting down and locking it away. I tried to put it to the back of my mind until my mum had received her results. Then the call came… 

‘I was praying it was negative, but it’s not,’ she told me. ‘You need to be tested now, Claire. I’m so sorry.’ 

Mum was upset. Not for herself but for what it could mean for me. 

I arranged to see a genetic specialist at Great Ormond Street Hospital and she took my blood. As I waited for the results, I tried to keep busy, but the scale of this overwhelmed me. It had literally come from nowhere. 

My life had been in a good place. I had a thriving song-writing career and had just got married. Yet now, I felt vulnerable, insecure, and scared. 

Crying to my husband, I told him if my results were positive, he could walk away. He assured me that he didn’t care and loved me unconditionally. 

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After a week, results confirmed I was positive for BRCA2. Four other members of my family had also been tested and two were positive. It was a lottery you never want to win.  

My grandfather’s mother had died in her 40s of what they’d thought was a stomach cancer. With this new information, it’s more likely the cancer was ovarian. 

That day I chose to keep it a secret from everyone but my husband and tried to get on with my life. Locking it away was the only way I knew how to cope.  

The NHS were there for me, offering me annual MRIs and mammograms. Every year I got the same feeling of dread when an appointment letter or results arrived. As I ripped it open, I’d feel the anxiety rising. 

It wasn’t until I saw the line ‘There is no cancer at this time…’ that I could breathe again. 

All I wanted to do was live my life, work hard and enjoy my marriage. 

I went onto have two beautiful children. When my second baby, my son, was born, I had a procedure called ‘life giving, life saving’, which is a c-section followed by removal of the ovaries. 

I’d decided to have this done even before I fell pregnant. I always knew once I completed my family, I wanted to do what I could to eliminate the chance of ovarian cancer.  

I went into menopause and started hormone replacement therapy (HRT) around a year later. 

Initially, I didn’t feel any urgency to do anything about my risk of breast cancer but then my aunt was diagnosed with it. Suddenly, it felt a lot closer to home.  

Seeing her go through chemo and suffer made me sick to my core.  

‘What about my babies?’ I thought frantically. ‘I can’t let them see me go through that – I don’t want to go through that. I want to see my children grow up!’ 

There was no guarantee I’d get breast cancer but I couldn’t live with this cloud of doubt.  

On 22 November 2022, I went into hospital for a double mastectomy and reconstructive surgery. The operation lasted a few hours and I was uncomfortable after. I couldn’t move my arms so when the nurse told me to eat something, a sandwich just sat looking at me until my husband arrived at the hospital to feed me.   

I couldn’t look in the mirror for at least two months but when I did, the reconstruction surgery wasn’t so bad. 

It took time to get used to sleeping a different way and not being able to feel your boobs anymore.

It’s good to have something else to think about and focus on when you’re about to face something life changing like losing your breasts. My business, fashion accessories company Neon Army, gave me the determination and drive to recover quickly. I was back working four weeks after surgery – much to everyone’s surprise!  

I’m so grateful to the NHS for having looked after me and for continuing to do so.

I told my immediate family about having the gene and going into hospital just before the operation as I felt they deserved to know before I made it public knowledge. 

Once I knew I was safe, I told the rest of my friends and family about my BRCA mutation. Of course, they were surprised to hear about it but were supportive.

My close friends were there for me. I think when it comes to something so personal, people do understand why you decide not to say anything, especially when you explain your reasons why.

I no longer need MRIs or mammograms but I still need to go for my annual bone density scans, along with regular blood tests and annual health checks. 

I feel like a huge weight has been lifted off me. Mum is on the waiting list for her breast surgery and she has already had her ovaries removed. 

For anyone else in this situation, please know, you can not only survive, but thrive.

As told to Eve Tawfick

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