I Inherited The BRCA1 Gene And Had A Double Mastectomy And My Ovaries Removed

25/03/2015 14:09 | Updated 25 May 2015

Angelina Jolie

This week Angelina Jolie revealed she's had her ovaries and fallopian tubes removed to prevent her from developing ovarian cancer, the illness that killed her mother at the age of 56.

"My doctors indicated I should have preventive surgery about a decade before the earliest onset of cancer in my female relatives," she wrote in the New York Times. "My mother's ovarian cancer was diagnosed when she was 49. I'm 39."

It's a decision that 41-year-old Niki Orchard, who is also a mum, knows all about. Just like the Hollywood actor, Niki discovered she had inherited the faulty BRCA1 gene, which significantly increases the chances of developing ovarian and breast cancers, and which led to the death of her own mum.

BRCA1 gene

"It was while I was waiting to find out if I had the gene that my mum died at 58, just two years older than Angelina Jolie's. I'd seen what she had gone through in the 13 years since her diagnosis of cancer, including chemo, invasive surgery and radiotherapy. So six months after the test results, I asked if I could have a double mastectomy, which Angelina Jolie had two years ago, as well as removing my ovaries," explains, Niki, who lives with her husband and two boys, Connor, 18, and Ethan, 13, in Essex.

Whilst it might seem a dramatic decision, Niki says she's always been a pragmatic, practical person, so she approached it positively. "In fact, my geneticist was surprised at how calm I was when I got the results of the test that showed I'd inherited the gene. But seeing mum go through cancer, I'd had a long time to get used to the idea and to decide what I would do if the test was positive. I think my decision was also made easier because I've already had my family."

Not everyone was supportive, however.


I have heard people say – and, scarily, this includes some women – that women who choose to have this surgery are self-mutilating through fear. But my decision was based on experience, as well as research, knowledge and statistics which showed that my breast cancer risk went up to an 85-90. I'd add that anyone who isn't scared of getting cancer is quite frankly an idiot.


The operation to remove her ovaries, fallopian tubes and uterus was pretty straightforward, says Niki. "The keyhole surgery consisted of three incisions and I was only in hospital a couple of days. My recovery was smooth too. I only had to make some minor adjustments, like not being able to lift and carry for a while, and I just recruited my husband and kids to pull their weight a bit instead!"

Niki's mastectomy – which ironically took place on what would have been her mum's birthday in September 2009 - was more complicated, however. The reconstruction surgery left her in pain and with uneven breasts, so she eventually had the implants removed.

Now she has prosthetics, although hardly ever wears them. "When I asked for the deconstruction, my surgeon said, 'You do realise that if I do this you'll have a chest like a little boy?'" she says. "I don't often get stuck for words, but I was mortified.

"I now wish I'd said, 'No, I'll have a chest like a woman who's had a mastectomy.' After all, I've never linked my femininity to how I look. I've never felt that because I don't have breasts, I'm less of a woman."

The removal of ovaries means a woman goes straight into menopause and Niki agrees with Angelina Jolie, who stated this week, "I feel at ease with whatever will come, not because I am strong but because this is a part of life. It is nothing to be feared."

"Any small fears I did have were completely outweighed by the reduced risk of cancer," adds Niki, whose menopause came on about six weeks following having her ovaries removed.

Waking up in bed in a hot sweat, despite only being in her 30s, were the worst part, she says. "My husband would take one look at me and say, 'You can't be that hot and sweaty without being ill.' But I wasn't. Sometimes, it was so bad that I would take my duvet and go and sleep on the children's trampoline, which was nice and cool. My neighbours thought I was potty!"

She still gets a few symptoms, such as the odd hot flush. "But mostly, I'm symptom free," says Niki.

Having sons means Niki doesn't have huge concerns of ovarian and breast cancer being passed onto her children.

"But the BRCA1 gene has been linked to prostate cancer and our family history echoes that very significantly," she says. "That said, medical advances are happening all the time, so I don't worry about it too much. In fact, whilst I have made both my sons aware of it, particularly the older one, I don't go on about it. They know if they bring it up, I'll talk about it, but I don't feel I need to shove it down their throat. If they choose to get tested, I will support them and if not, that's their decision."

As for Angelina Jolie, Niki says she thinks it's great she's spoken out. "She has made women aware, who might not otherwise be, that you can do this and get on with your life. By bringing it to the forefront of the press, she has undoubtedly saved women's lives."

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