Previving breast cancer – BRCA2 gene and me (part one) 

Hello! Firstly, I’d like to say a huge thank you to An Ordinary Mummy for asking me to write a guest post for her blog and secondly, thank you, to you, for taking the time to read my little story.

A little introduction.

My name is Bex and I am a breast cancer previvor. Probably not a term that you’ve heard before, as unfortunately there are not a whole lot of us previvors around… yet. You see, I had this wonderful gift given to me, a gift given by my ancestors through many generations. I got the gift of being able see my future and the gift to change it.

I am BRCA2 positive.

The family, in recent years, has been undergoing genetic testing due to the amount of family members who have had breast cancer and it was discovered just over 5 year ago that our family has a defective BRCA2 gene and its effects can be quite nasty. On the other hand the discovery of this gene can help prevent breast and ovarian cancer, with regular screening and options of surgery, those with the defective gene can have their chance of breast cancer reduced from 85%+ down to less than 10% – and that, to me, is just amazing.

Once diagnosed, I had to face some life changing decisions. Being told I was a carrier, to me, was not news that I needed to dwell on or feel upset about. It meant that I had a fighting chance. It meant I could make proactive choices that could ultimately save my life and although initially terrifying, I began to realise that this gene was actually giving me an opportunity to change this predicted course and was allowing me to dictate and secure my future health and happiness. I now had the opportunity to take dramatic action. I could opt to undergo two major operations which would hopefully give me the chance to save my life The first being a bilateral double mastectomy. This would remove all my breast tissue and nipples, then my surgeon would rebuild my breasts using strattice (a strip of pig tissue) and a silicone implant. The second operation would be the removal of my ovaries and fallopian tubes.

Now, if you were about to fly on holiday and the pilot said “Ladies and gentleman, there is a 90% chance that this plane will crash and you may die” don’t you think you might get off that plane as soon as possible?! You wouldn’t cross a road if there was an 90% chance of being hit – even if you were wearing every possible item of protective clothing and you were warned that the car was coming, I know I would find a different route. How can I NOT have these operations? If I develop breast cancer which, lets face it I am almost bound too, how do I look my children and husband in the eye? When little Elle, Ben and Harriet say “Mummy why didn’t you DO something?”. For me it is a no-brainer and I only have ONE option.

On the 27th August 2013, the night before my operation, I made a pact with cancer. I would sacrifice my breasts up onto the alter. It could take them from me but then it was to leave me well alone. It was not allowed to take the rest of me and may not visit my body at all. I told it to take them and run. That was the deal.

And so I did it…

I really did do it.

I took the gene head on.

I went into surgery at around 4pm on 28th August 2013. I kissed my children goodbye in the morning and my husband left me, teary eyed at around 8am. I was scared. So very scared. I was not scared about losing my breasts, I was not scared of how they would look afterwards, to me, all that was irrelevant. I was scared that I wouldn’t wake up. I prayed and prayed and nearly 5 hours later I woke up in recovery.

I awoke with 4 drains in me and a horrible “tightness” around my chest, arms and back. The rest, to be honest, is a bit blurry. I remember Paul coming to see me around half 9 ish. I remember him looking so white, I can’t imagine what I must have looked like, I’m grateful that I didn’t have to see. Our conversation was a bit hazy as I drifted in and out of sleep. He kissed me on the forehead, told me he loved me and left. I fell asleep and had one of the worst nights sleep I’ve ever had – even with 2 kids!

I was closely monitored throughout the night by the wonderful nurses who kept coming in to check on me. I had a button clenched in my hand, it was for the morphine. I held on to it tightly but managed to get through the night without it.

It was 6am when I heard the nurses do their rounds. That’s when I really “woke”. That’s when the pain really hit. The anesthetic was disappearing and I was close to tears. I had 1 drain under each arm and 1 drain under each breast. The most painful thing was the tightness. It’s so hard to describe…

The rest of my recovery was a bit of a blurr. I kept my drains in for 14 days and by the end of September, I felt amazing. Sore, tired but amazing.

Just after my son’s 2nd birthday, I walked out of hospital after a check up and phoned my husband. “The doctor has given me the all clear, my breast tissue is clear, it’s time to get on with our lives!!!” The sun was shining, I was overjoyed.

The happiness was short lived…

My left breast, “lefty”, had been a bit of a nuisance since day one. It hurt more, it was more swollen, the drains coming out of it were filled with nasty liquid, it was always just a little bit more trouble.

I saw my consultant the first week in October. I was concerned about the look of the wound across the middle of my left breast. It just didn’t look right. My consultant agreed. We discussed leaving it for a few days to see how it developed and if I had any trouble I was to call him. On Thursday it had become worse. I made a frantic call to the Breast Care nurses and left a message. Friday morning I received a call back saying my consultant (Mr S) would like to see me ASAP.

Paul rushed me up to the clinic and Mr S assessed the situation. Mr S explained the risk of another surgery, infection, general anesthetic etc. He told me he didn’t wish to operate unnecessarily but that the implant was pushing my scar open. Basically, the wound would pop open at some point, he just didn’t know when. I was sent home with a complete kit of saline, gloves, dressings – the works! And Paul was sent home with strict instructions on what to do “when” my breast burst open! – Well the weekend was a nightmare. I was petrified to do anything. I was scared I would end up at A&E and no one would know what to do!

Luck was on my side and by the Tuesday, there was still no split. I found myself back with Mr S. “We need to operate” was his response. I knew it was coming, but I had hoped and prayed that it wouldn’t be necessary. I’d hoped that my awesome breasts would make a come back and save the day. Mr S explained to me that the surgery would be a 10/15 minute procedure where he would cut away the bad skin, the part where my blood vessels had died, and literally pull the skin back and sew.

The morning of the op, I was slightly apprehensive, but nothing major. I kept thinking “It’ll be fine, the last operation was a lot longer, this will be easy” … I saw patients in the day unit coming in and out. Some crying as it was their first ever operation, I felt optimistic. At 2:30 I was called and sent down to theatre.

I awoke 2 hours later. The first thing I did was check down my gown. Phew… I saw gauze and padding, I thought it had all gone well. Within a minute of opening my eyes, Mr S was there. He held my hand, looked me in the eyes and said “I’m so sorry Rebekah. I did everything I could, but I could not save the implant..”

Two tears fell.

I was numb.

I looked again, “lefty” wasn’t there.

Before I was let home, Mr S came to see me. He explained that the strattice (pig tissue) hadn’t taken. It hadn’t attached itself to my skin, so was effectively floating around in the build up of fluid. He had no option but to take it all out. He had tears in his eyes as he told me. I wanted to hug him and tell him it was ok…

I left hospital at 9:30pm drain in hand and one boob down.

It’s been tough. The discovery of having the BRCA gene was tough, but incredible. The first operation was tough, but worth it. Then I was told I would have to live for the next 4 months or so without my left breast. It was so very hard to come to terms with. The hardest part being, I WAS NOT ILL!!! I’ve been so lucky not to have been diagnosed with breast cancer, yet I’m forced to bear a similar scar.

Mr S said he could rebuild my breast, but it will take time and multiple operations. I had one shot at the strattice and implant and my body rejected it.

I was in limbo after that operation. I couldn’t look at myself. Looking in the mirror made me cry. My left side was sunken in and flat against my chest cavity.

Big, baggy jumpers were my new best friend…

It is such an obvious thing to write but I so believe in the power of the mind and the power of positive thinking. It would have been easy for me to become a “victim”. I could’ve wallowed in fear and had sleepless nights filled with horrifying imaginings about the forthcoming operations OR I could embrace the kindness of my friends, squeeze the hands of my children and appreciate every second of my precious marriage. I could remember how lucky I was and remind myself how I would, now, hopefully, avoid chemo and ruthless cancer therapies. I would embrace the miracle opportunity that had been given to me and keep that smile on my face.

I write about the BRCA2 gene, because I want to instill hope. Over the years the work and research that Cancer Research UK , Breakthrough Breast Cancer and all the other charities, doctors, scientists who help to fund, support and discover breakthrough treatments have provided me, my family and so many other families out there, a way of breaking free of the mould.

Thank you for listening and letting me share the first part of my story with you.

Love Bex xox

If you would like to find out more about the BRCA2 gene these are two excellent sites.

Bex will be writing a second post about her BRCA2 journey which will be published next week, to make sure you don’t miss out follow An Ordinary Mummy on Facebook.

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