The discovery
My grandfather, in his 80s, had been admitted to hospital for something unrelated to cancer but by chance, the doctors discovered he had a lump in his breast which turned out to be breast cancer.
The hospital suggested the family test for any alterations on the BRCA genes.
My mum kept this from me.
She knew I wanted to start a family and hoped she would test negative, to save me the burden but upon visiting my grandfather, he turned to me and said ‘do you know?’
‘Do I know what?’ I replied.
My mum gave my grandfather ‘the look’ -the one you get from your mum when you’re small and you do something wrong, the same look I now use effectively on my own children!
At this point, I knew she was keeping something from me. ‘You need to tell me what’s going on, I’m 36, I think I can cope’
In my naivety, I presumed this would be about my grandfather.
‘They discovered a lump which is breast cancer and now the doctors say we should test for alterations the BRCA genes’
At first, I was confused. Trying to digest it. I said ‘I don’t understand, what is the BRCA gene and what does this mean for me?’
My mum was so upset that my grandfather brought it up. She was angry with him and said ‘why say anything before I’ve tested. Why worry her’
It was too late. I was worried. What do I tell my husband? What if I have it and he doesn’t want to be with me anymore?
I decided to calm down, take a deep breath and take one step at a time. I may not have it. Think positive.
The results
Mum went to see Dr Alison Male, a genetics specialist at Great Ormond Street to get tested. It’s just a quick blood test and the results come back within a week.
‘I have it Claire. I’m so sorry. You need to get tested now’ mum said.
My heart sank.
I went to see the same doctor and was asked to come in for the results. At that point, I just knew I was positive for the gene alteration. My brother who also tested, was negative. It’s a 50:50 chance of getting it. I call it the lottery you never want to win.
Alison offered me counselling but I declined. I completely shut down emotionally and though aware of the facts, to those around me, no one knew. I made my mum promise not to tell anyone apart from my dad. No one else in the family or friends could know. As far as everyone was concerned, I was negative for it. I just needed time to be in my own world, to process this in my own time and in my own way with my own thoughts.
It was a pattern in my life to shut down when I couldn’t mentally cope with something. I would lock it up inside and carry on as normal. To the rest of the world, no one would have known the weight I was carrying.
I phoned my husband when leaving the hospital and said ‘It’s positive, you can leave me if you want, I’ll understand’ and he told me I was being ridiculous and loved me more than anything no matter what. I know it sounds stupid, but I felt guilty.
The life-giving, life-saving procedure
In 2016 I welcomed a beautiful baby girl and in 2018, at 40 years old, I became pregnant again
and was heading into worrying territory with higher ovarian cancer risk. I knew, once my baby was born, I had completed my family so wanted to know how long I would have to wait, after giving birth, to have an oophorectomy which is removal of the ovaries.
Knowing that my great grandmother had died of a stomach cancer in her 40s, it could well have been ovarian cancer misdiagnosed, so I didn’t want to leave anything to fate. I wanted control and I wanted freedom from this cloud of fear over me.
By researching online, I came across an article about a pioneering surgery where a lady called Emma Kyriacou, who was a BRCA alteration carrier had a baby by caesarean section and then her ovaries removed at the same time with Professor Adam Rosenthal.
I immediately got in touch with both Professor Rosenthal and found Emma through Facebook.
Emma was so warm and understanding and gave me an in-depth account of what to expect in both the birth and recovery and I also went to see Dr Rosenthal who made sure I was prepared for this surgery.
I made up my mind, I wanted to have the double surgery to eliminate the high ovarian cancer risk and avoid going back into hospital for another operation. I also didn’t want to have to leave my children. It just made sense.
As I had an emergency c-section with my daughter, I had a benchmark of what to expect from c-section surgery and recovery.
The day of the surgery
I had gestational diabetes during my 2nd pregnancy so I had to be scheduled for the surgery two weeks early but I was happy to get it over and done with sooner rather than later!
I really wanted a particular doctor, Dr Patrick O’Brien to perform my surgery but was told he only dealt with complicated cases. Dr Patrick O’Brien was the obstetrician who did Emma’s surgery and I wanted him because I trusted Emma. She was a rock and guided me through all my surgeries.
I was prepped for surgery and then walked to the theatre. Standing there in front of me was Dr Patrick O’Brien and I remember saying ‘you’re Patrick O’Brien, I really wanted you!’ I actually felt a sense of relief that he was there and was doing it because I was feeling so anxious.
Once they gave me the spinal tap and meds, I was very relaxed. They performed the c-section and then passed me my baby boy so I could meet him and have a quick cuddle, then my husband took the baby as they said they would now do the 2nd part of the surgery.
The surgery took around an hour and then I was in recovery. I was extremely tired for 24-48 hours but my recovery was no different to when I had my daughter.
The only difference was the bruising which lasted a year on my tummy. It didn’t hurt, was just discoloured black but Dr Patrick O’Brien checked it and wasn’t concerned. He said it will eventually go and it did.
Life after surgery
Having this surgery was worth it because I now don’t have to live in fear of ovarian cancer.
Having now also had a risk reducing double mastectomy in November 2022, I feel empowered, like I got my life back. It felt cathartic to finally be able to open up and speak about my journey and found a sense of purpose in sharing my story and wanting to help others.
I launched my new business, Neon Army, a fashion accessories brand in June 2022 even though I knew I was on the waiting list for a double mastectomy at the time. One thing life has taught me is that you can’t let anything hold you back. Life is short and precious so make each day count.
I’ve also used my business for good by fund raising for amazing charities like Future Dreams, a dedicated breast cancer charity. A charity who gave me support after my double mastectomy.
For further support or information our Ask Eve nurses are here to help. You can get in touch for free by emailing nurse@eveappeal.org.uk, calling 0808 802 0019 or filling in this form.