Having a double mastectomy and reconstructive surgery following testing positive for the BRCA2 gene mutation
Annie and I met in a wonderful hostel in Colombia, and got on SO well I followed her all the way to the most northern part of Colombia, sleeping in hammocks in the desert and getting stuck in sand dunes.
I’m actually not sure how Annie and I even got onto the topic of her boobs – maybe I was staring at how magnificent they looked in a bikini. In fact, I was DEFINITELY perving on her in the swimming pool and she told me that they were in fact a result of a preventative double mastectomy. Annie wrote me such a personal account of what happened to her that I’ve posted it below. This is her story.
In March 2016, I had a preventative double mastectomy with DIEP flap reconstruction.
The previous year I was tested for the BRCA2 gene mutation as my Dad and Grandmother had both suffered from breast cancer. I was 27 at the time and had agreed with my parents that I would have the test when I was 30. In reality though I couldn’t wait and decided to visit my GP and get it out of the way. If the news was good then I could forget about it, if I had the gene then at least I would know for certain and could do something about it.
About 12% of women in the general population will develop breast cancer sometime during their lives. By contrast about 69% of women who inherit a harmful BRCA2 mutation will develop breast cancer by the age of 80. The risk of developing breast cancer is increased for men as well. Source: https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet
On the results day, my best friend asked me if I wanted her to come along for moral support. I said I didn’t need her to, but we got the bus together as she was heading in the same direction. As we passed her stop, I realised she had tricked me and was coming along and thank goodness she did. I tested positive.
I opted to have a preventative double mastectomy as soon as the National Health Service (NHS) could fit me in. For me this wasn’t a difficult decision and at this point the hardest part was telling my mum that I’d secretly had the test and of my intentions. I knew that any decision I was going to make was going to have a huge impact on her and our family. In fact her reaction was relief as she also felt this was the best option. It meant I would have to have 4 operations over the next year.
The first operation was a double mastectomy and reconstruction. The surgeon removed all of my breast tissue and my nipples. In the same operation the breasts were reconstructed with fat from my stomach. A bit like a tummy tuck, they removed my belly button and put it to one side, took out an oval shape of fat and blood vessel and transferred these to my chest. The surgeon then stretched and sewed up my stomach and then put my belly button back. This was a twelve hour operation and 6 day stay in hospital.
Waking up from the operation I felt incredibly tight and sore. I was worried it had gone wrong as my armpits were really swollen and it felt like the implants were in the wrong place! I was also warned to drink lots of tea to make sure I didn’t get a cold. Sneezing was excruciatingly painful. I was given a morphine button to press but this made me feel really unwell and quite frightened within my surroundings so I didn’t use it.
When they attached the fat to my chest they had to check that it had successfully transplanted, like they would an organ, so this meant checking for a ‘pulse’ every hour for the first few days after the operation. This meant that I didn’t get a lot of sleep and I was quite emotional for the first couple of days. Despite this, the speed of my recovery on the ward was remarkable.
I was home on day 6, back to my parents to recover before returning to work.
A few months later I returned to have some of the transplanted stomach skin removed from my chest. The stomach skin was transferred with the fat as an indication of the health of the tissue underneath and being a different colour to my chest skin, it was removed.
The third operation was contouring liposuction. Having been operated on by the plastic surgery team, I received the Rolls Royce of care and this included going back for tweaks to make sure I was happy with my new shape. Where my stomach had healed I had some imbalance of old and new skin and fat. A bit like when you take your jeans off and you have a mark, I had those indentations all the time. So the surgeon did a nice bit of shaping and smoothing.
Finally, I returned for my final operation several months after that. I was awake for this procedure which meant lying down whilst the surgeons pinched a part of my breast and stitched around it to make new nipples. This was possibly the most gruesome part of all the surgeries but finally after over a year, everything was surgically complete.
How did you feel about the situation?
I have always been pretty logical and I tend to make decisions and stick to them. I had a problem and I had a solution that would almost solve it. That’s not to say that it wasn’t a major curveball. I had been working in the city for several years and I was at the point where I was really ready to leave my role and look for something new. Having the surgery would mean 3 months off work, I was told I shouldn’t have children for 2 years and that I would never breast feed.
I will admit to having a few wobbles and ‘why me’ moments, but my overriding emotion was relief that I knew I had the gene and also that I was in a position to make a positive choice for my future. In the UK we are lucky enough to have a national health service which paid for all my surgery, tests and doctors’ appointments. Preventative surgery isn’t normally covered by health insurance and opting to have this surgery privately could have cost me all my savings or my parents’ house.
I could have a double mastectomy with silicone implant reconstruction. The operation took a couple of hours and I could be back at work in a few weeks. With this option I would be signing up for replacement implant operations every 10-15 years for the rest of my life. I didn’t know where I would be in 10 years, whether it would be possible to take time off work, continue with my life and have the surgery. So the more lengthy complex operation seemed like a better investment in my future.
The operation couldn’t have gone better. I was given the highest level of care and I made a great recovery in hospital and could return home after 5 nights, the normal stay is 10. Family and friends visited, work gave me the time off with pay. It was painful and uncomfortable but I think the novelty of being in hospital distracted me from this pain and I just got on with it. I spent 3 months recovering at home and set myself little goals. I put my makeup on every day without fail (a shock to anyone who met me whilst I was backpacking!!), I was back in my jeans within a week and walked little and often. The wounds from my operation were painful, I looked so different to before my surgery but I just tried to keep positive and think this situation could have been so much worse. I was so fortunate to have been tested in the first place, to receive free healthcare and to have a family who could look after me and let me stay with them whilst I recovered.
How did you deal with it in a positive way?
I suppose the situation has taught me to be slightly less rigid and obsessed with life goals and where I should be in life by now. When I was interviewed for my previous job, 10 years ago, they asked me the classic interview question of where do you think you will be in 5 years’ time. I went for the very original, “I hope to have my own house and a car”. 10 years later and I am still not quite there but that’s ok, because things have happened that have made me take different routes and I think I am more resilient for it.
A year ago I was given the opportunity to either take redundancy from my job or be given a different role in the same company. Old me might have taken the different role and been grateful for the stability and income of my job. Instead I decided to take voluntary redundancy and I spent the next 11 months travelling around South America on my own.
For the first time that I can remember, I chose to make time for myself like I had for my health
I bought a one way ticket to Colombia and with the vaguest of plans and a backpack.
I took buses from the most northerly point of Punta Gallinas in Colombia to Ushuaia at the southern tip of Argentina. I partied at Rio Carnival, climbed the mountains of Patagonia, danced salsa in the streets of Cali, ate fresh tuna on Easter Island and swam with sea lions in the Galapagos Islands.
What are your thoughts after this experience?
Make the time to travel, if a doctor prescribed it for the good of your health, you wouldn’t give it a seconds thought.