“I had ‘life giving life saving’ surgery”

claire neon army

by Stephanie Anthony |
Posted on

Claire Rodrigues Lee, 45, is a professional songwriter and founder of fashion accessories brand, Neon Army. As a mum of two and carrier of the harmful BRCA2 gene, Claire made the decision to have a procedure called 'life giving life saving' after the birth of her son, Jack, in 2019. Here’s the story of her diagnosis, birth story and recovery…

A day I will never forget.

The day when the results came in, to tell me I was a carrier of the harmful BRCA2 gene.

My grandfather had recently been admitted into hospital for tests and the doctors discovered a lump in his breast by chance.  It turned out to be cancer and the family were told to test for the BRCA gene as breast cancer in men, is rare.

Tests revealed that some of us were positive for BRCA2 and some of us were negative.

It’s the lottery you never want to win.

BRCA1 and BRCA2 are two genes that are important to fighting cancer. They are tumour suppressor genes. When they work normally, these genes help keep breast, ovarian, and other types of cells from growing and dividing too rapidly or in an uncontrolled way.

However, in some people, these tumour-suppression genes do not work properly. When a gene becomes altered or broken, it doesn’t function correctly.

Having the gene mutation in BRCA1 or BRCA2 means you are at a much higher risk of developing breast or ovarian cancer.

Suddenly I went from being a carefree, happy newlywed with a successful songwriting career to suddenly living with a shadow over me.

I looked in the mirror daily and questioned what was normal when checking my breasts or wondering if the occasional stomach cramp was somehow related to ovarian cancer. You become paranoid. There is no escaping that.

At this point, I blocked it out and pretended to the world nothing had changed. It was the only way I could cope with this heavy burden. Just be me. Smile. Be happy. Be cheerful. Life is just as it was before I knew. Only that every year I was called for MRIs and mammograms to let me know I ‘didn’t have cancer at this time’.

Those appointment and result letters can literally make your heart stop for a few seconds every time you open them.

Only my immediate family knew as I didn’t want hundreds of questions. I just wanted to get on with life and so I did. I knew eventually I would have to face this and make life-changing choices to be safe.

In 2016, I welcomed my firstborn, a beautiful baby girl called Ella.

My husband and I agreed that when we had completed our family, I would have a procedure called ‘life giving life saving’. When my son, Jack was born in 2019, he was born by C-section and then they would remove my ovaries straight after.

I found out about this procedure purely from an online search and came across an interview with surgeon Adam Rosenthal and a woman called Emma who was the first to have the operation previously. I got in touch with Dr Rosenthal at UCLH and was able to locate Emma on Facebook. Since that first connection, she has been with me every step of the way like a guardian angel.

The procedure itself isn't much more complicated than a routine c-section, just that after the baby is born (life-giving) the ovaries are removed (life-saving).

I was nervous prior to the surgery as it was such a new procedure at the time - I was the second person in the UK to have this procedure - and I kept asking UCLH for Dr Patrick Obrien to do the surgery but UCLH at the time wouldn’t refer me. He was the obstetrician who did Emmas. It wasn’t until I walked into the theatre to have the c-section that I saw him standing there and I was so happy to see him. I remember saying "You’re Patrick Obrien…I wanted you!" He’s one of the top obstetricians in the UK and he was absolutely incredible.

If someone is considering this procedure, I'd say it’s a good idea not only because it eliminates the high cancer risk but also means you don’t need to go into surgery twice. Your recovery rate is the same - I had my first baby by c-section and I wasn’t in recovery any longer the second time even with the oophorectomy straight after.

As I had my daughter by emergency c-section previously, I felt I knew what to expect from c-section recovery and apart from bruising which lasted for almost a year, my recovery really was no different. My stomach was bruised black and blue for up to a year but eventually, it faded. It didn’t hurt was just discoloured for quite a long time.

One thing I learned during this time is that a woman can still carry a baby even after she’s had her ovaries removed. So long as she has a womb, she can carry a baby. If a woman needs to have her ovaries removed, for whatever reason, they can freeze her eggs and have IVF at a later date after having an oophorectomy. Advances in medicine are just beyond incredible and it’s amazing to have choices for whatever the circumstances may be.

After having Jack and my oophorectomy, I wasn’t allowed to start HRT straight away and was told to wait around 9 months before I could start to allow the pregnancy hormones to settle.

I didn’t breastfeed, but I had difficulty in doing so with both my children so I don't think this was due to the surgery.

Going into early menopause with a newborn and toddler was challenging and it took the best part of a year to get my HRT right. There is no one size fits all with HRT. On top of all the usual new mum challenges we face, I was hot, sweaty, exhausted and admittedly a little insecure about how I looked post having two children by C-section and this surgery. The HRT patches weren’t compatible with my skin and kept peeling away. Then when they changed me onto oestrogen gel, it didn’t absorb into my bloodstream. I eventually found what worked for me. The tablet form of oestrogen, progesterone and testosterone gel. I use the gel for fatigue but some women use it for libido.

It was a journey until I got the HRT right but once I found the right balance, everything started to get back to some kind of normality. I felt like I’d recovered from my double surgery and life was getting back on track. Then Covid hit. Finding myself uninspired to write songs I turned my creativity to upcycling my clothes, and felt the same fire inside of me that I had for music.

In 2022 I had a double mastectomy and also launched my own business, Neon Army. In January 2023, I turned 45 and have never felt more comfortable and confident in my own skin. Positivity has helped me throughout my journey, it’s amazing what a positive mind can overcome. If my story can achieve something, I hope it’s this. Age should never be a factor to hold you back whether it’s starting a family, starting a business or following a dream. Anything is possible.

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