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

When I arrived at the hospital in September 2014, my grandfather was in bed. Mother didn’t seem to be herself. Calm, nervous.

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

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

When my grandfather opened his eyes, he turned to mom. “Did you tell her?” he asked. Mom glared at him, told him to shut up, but it was too late. I had heard.

“What did you tell me?” I have asked. She looked at me uncertainly and I started to 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 was sure,” she explained. “Because it’s so rare for men to get breast cancer, doctors advised me to do a genetic test for the BRCA gene.”

This was the first time I heard about the BRCA gene, but it certainly won’t be the last.

All women have BRCA1 and BRCA2 genes, but few have mutations that put them at a higher risk of developing breast or ovarian cancer.

I went and investigated. When I was this carefree person I suddenly started worrying about getting cancer and when I looked at my breasts I thought I could see lumps and changes.

I was advised but not accepted. I’ve always been someone who handles difficult situations by shutting them down and limiting them. I tried to think about it until my mom got her results. Then the call came…

“I prayed it was negative, but it isn’t,” she told me. “You need to get tested now, Claire. I’m very sorry.’

Mom was upset. Not for himself, but for what it could mean for me.

I made an appointment with a genetics specialist at Great Ormond Street Hospital and she took my blood. I tried to keep myself busy while waiting for the results, but the magnitude of it overwhelmed me. It literally came out of nowhere.

My life had been in a good place. I had a successful songwriting career and was newly married. But now I felt vulnerable, insecure and afraid.

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

After a week, the results confirmed that 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 of stomach cancer at the age of forty. With this new information, it is more likely that the cancer was ovarian cancer.

That day I decided to keep it a secret by everyone except my husband and tried to move on with my life. Locking it up was the only way I knew how to handle it.

The NHS was there for me, offering me annual MRIs and mammograms. Every year I had the same sense of dread when an appointment letter or results came in. When I tore it open, I felt the fear build up.

It wasn’t until I saw the line “There’s no cancer now…” that I was able to breathe again.

I just wanted to live my life, work hard and enjoy my marriage.

I had two beautiful children. When my second baby, my son, was born, I underwent a procedure called “Give Life, Save Life,” which is a cesarean section followed by ovarian removal.

I decided to have this done even before I got pregnant. I always knew that once my family was complete, I wanted to do everything I could to eliminate the risk of ovarian cancer.

I went through menopause and started hormone replacement therapy (HRT) about a year later.

At first I had no urgency to do anything about my breast cancer risk, but then my aunt was diagnosed. Suddenly it felt much closer to home.

Watching her go through chemo and suffer made me sick to the bone.

“What about my babies?” I thought desperately. “I can’t let them see me go through this – I don’t want to go through this. ‘I want to see my kids grow up!’

There was no guarantee that I would get breast cancer, but I couldn’t live with that cloud of doubt.

On November 22, 2022, I went to the hospital for a double mastectomy and reconstructive surgery. The operation took a few hours and after that I felt unwell. I couldn’t move my arms and when the nurse told me to eat something, there was a sandwich and watched me until my husband came to the hospital to feed me.

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

It took some getting used to sleeping differently and not feeling your breasts anymore.

It’s good to think about and focus on something else if you want to do something that will change your life, like lose your breasts. My company, fashion accessories company Neon Army, gave me the determination and drive to recover quickly. Four weeks after the operation – to everyone’s surprise – I was able to go back to work!

I am so grateful to the NHS for looking after me and continuing to do so.

I told my close family that I have the gene and went to the hospital right before surgery because I felt they deserved to know before I went out.

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

My good friends were there for me. I think when it comes to something so personal, people understand why you choose not to say anything, especially when you explain why.

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

I feel like a huge burden has been lifted off me. Mom is on the waiting list for her breast surgery and her ovaries have already been removed.

Everyone in this situation should know that you can not only survive, but also thrive.