It's all well and good telling you the stats surrounding breast cancer – more than 4,000 UK women will be diagnosed with breast cancer just this month – but what about the actual women who are affected? Here, we meet Aimi, who reveals how her decision to have a double mastectomy saved her life.
BRCA gene inheritance
“Back in November 2012, I was running late for work and had the TV on as I rushed to get ready. Michelle Heaton was on a breakfast show talking about being diagnosed with the gene that puts her at risk of cancer and it suddenly dawned on me that I should get checked out. I lost my mum to breast cancer when she was just 35 – I was only six when she died. My grandmother and great grandmother died from ovarian cancer, too, at 36 and 35, and cancer goes back even further through my family history.
“The only time I’d really discussed with anyone how this could impact me was when I was about 18 and invited to the family history clinic at my local hospital. At that age though I just couldn’t process it all, I was so naive. Throughout my twenties I pushed it to the back of my mind. I was aware there was some kind of gene that raises your cancer risk but I didn’t know anything about it, nobody had really told me anything. I remember saying to friends, “well if I get cancer, I get cancer”, which is embarrassing now that I thought that.
“So after hearing Michelle’s story, I spoke to my doctor and she referred me to the genetics team at the hospital. I had to have counselling sessions before they’d do the blood test that reveals if you carry the gene. At the time my counsellor asked me, “what do you think you’d do if your test came back positive?” I remember replying, “I’d have all the surgery I could to lower my risk.”
Having a double mastectomy
“It was February 2013 when I found out that I did carry the BRCA1 gene and I was put in touch with a consultant to talk through the next steps. An option was having a mastectomy – the removal of my breasts to reduce the risk of cancer developing.
“I didn’t have to have the mastectomy, I could have just been monitored with tests and mammograms instead, but I was almost 30 and I questioned whether I wanted to spend the rest of my life worrying about finding a lump. If someone says to you, “here’s a taxi – if you get in this taxi there’s an 87% chance you’ll crash and you’ll die,” or “here’s another taxi and there’s only a 12% or lower, risk that you’ll crash,” you’d always take the second taxi, right?
“It was a difficult thing to decide though – and it’s a horrible situation to be in when you don’t actually have cancer but you’re still having to make the same decisions as women who do. Even though I knew I wanted the operation to save my life, there were some points when I thought, “why me, why do I have to make this life-altering decision?”
“Six months after finding out I carried the gene, I had a double mastectomy and breast reconstruction. I had all my tissue removed and went straight to having implants. I was advised by my surgeon to have my nipples removed too, so they are now tattooed on.
Losing my breasts
“As soon as I came round from the operation, I started to grieve for my breasts. Up until having the surgery, I had just focused on getting myself fit so I’d recover quickly after the op. I’d turned 30, I’d gone on holidays and was getting on with things. I never properly sat down to come to terms with what I was about to do. It was only afterwards, when I started counselling again, that I went through a phase of being really, really upset about losing that part of my body – and I never thought I was going to feel that way.
“I see a lot of girls pre-op that have bye-bye boobies parties, or will document their whole journey, photographing their body and celebrating their boobs before they lose them. I wish I’d done that now, but at the time I had a very practical mindset – I just thought, “I have to do this so I can live.” I couldn’t think beyond eliminating the risk of dying.
“Some women both pre and post op, see them as just boobs and nothing special, and that’s what I thought about mine before they were gone. In a way, I’ve mutilated my body to keep myself from dying. I’ve got scars, I’m not happy with my reconstructed boobs – I’ve had three ops in total and they’re still not quite right. So even though they are just breasts, they’re yours and they’ve been part of you for so many years. You’re losing part of what makes you female.
“Surgery is a massive, massive thing, but for me, it’s prolonging my life so it’s a no-brainer. I have also decided to have a full hysterectomy soon – so it’s not just my breasts that will have been removed, but my ovaries too – all my womanly organs will be gone. I’m struggling with that, but again, I’m getting help from my counsellor and I have my partner, sister and friends to talk it through with.
“Angelina Jolie went public with her mastectomy story the week after I found out I was carrying the gene – some people were even rude enough to say I was jumping on the Jolie bandwagon. It’s fantastic that a big celebrity brought it into the public eye, and many women have gone on to be tested and have surgery after reading her story. At the time though, I was focusing on saving my own life and really didn’t need to be accused of trying to copy Angelina Jolie.
BRCA and conceiving
“Another part of my BRCA journey was speeding up baby-making if I wanted a child. You don’t realise how much this impacts you until you’re faced with potentially not having one. I’ve met lots of BRCA women whose hearts are breaking because they can’t have babies.
“I met my partner after I had my mastectomy surgery – we have mutual friends so were set up. He’s supportive and to him it’s not an issue. I did have to explain it all to him though at first. He didn’t really know what a mastectomy is, which shows how little the surgery is spoken about.
“We started the process to freeze my eggs, but when I met with the gynaecologist she could sense I was really anxious about it and told us to go away and try to make a baby ourselves, and to come back in six months if nothing had happened. My daughter Rae was born seven months ago. She’s so happy and content and she feels like a blessing. I know how lucky I am.
Passing the BRCA gene down to your children
“I had Rae knowing that there’s a 50% chance of passing the gene on to her, and at the moment, I’m really battling with the guilt of that. Some people have told me I’m selfish for bringing a baby into the world, knowing that I carry the gene. But I keep reminding myself there’s also a 50% chance that she won’t have it. My mum had me and my sister not knowing about the gene, but I still don’t think her decision would have been any different had she known. My sister tested negative and I pray that Rae also doesn’t have the gene. If she does, I hope that in twenty years time there may be more medical advances that can help her. You just have to take each day as it comes.
“I now visit schools, colleges and workplaces with CoppaFeel! to raise awareness of the charity and their work. I’ll admit, despite my family history I never once checked my boobs. I now go out and say to people, “it’s totally ok to touch and check your boobs and really get to know what your ‘normal’ is.”
Talking about boobs!
“When I go into a school full of teenagers, they’re a bit giddy and think it’s funny to be talking about breasts – we wear these giant boob balloons to break the ice. As soon I start telling them my story though, you see their attitudes change. By the end, both girls and boys are asking questions and are really interested which is the whole point.
“I also educate people about the BRCA genes as so many people still don’t know what they are. Before me, my friends and family were totally unaware you could even be tested.
“Some people in the BRCA community call themselves “A Previour” – meaning we’ve prevented ourselves from being a survivor. What I’ve really learnt from my experience though is how brave you can be when you’re in this situation. I sometimes can’t believe that it’s actually me that has gone through it all.”