Why are more women having mastectomies?

In May, Angelina Jolie announced that she was having a double mastectomy even though she was healthy. Since then, according to one British clinic, the number of women requesting a similar operation has risen fourfold. Are women too readily taking on the risk of breast removal?

When Angelina Jolie announced earlier this year that she had undergone a double mastectomy to avoid the risk of breast cancer, she was not alone. The pop singer Michelle Heaton had a similar operation last year – the details of which she shared with viewers of the Lorraine show. And Sharon Osbourne has done it recently, too. When she found out she had a genetic mutation which increased her risk of cancer, she said: "I decided to just take everything off. I didn't want to live under that cloud."

It's a trend, if that's the right word, that has been rumbling for a while, but it was Jolie's disclosure which sent shockwaves through the world of cancer care. After her announcement in May, doctors reported that the number of women requesting mastectomies rose steeply.

"The number of women requesting breast-removal surgery rose fourfold [after Jolie's statement] and the number requesting genetic tests to detect susceptibility was up 67 per cent," says Professor Kefah Mokbel, of the London Breast Institute at Princess Grace Hospital. "It concerns me that some women will be over-treated."

Currently about 18,000 mastectomies are performed on the NHS each year in England. That figure has risen by more than 50 percent in the past 10 years. While there is no official figure to show how many of these are preventative operations given to women without cancer, as was the case with Jolie, it is also thought to show a marked increase. Mokbel believes there are two reasons for this: "Fear and desperation."

"The word cancer strikes such a level of fear that people want to do everything possible to stop it recurring – even if that means more invasive, unnecessary surgery," he says. "And people such as Angelina Jolie have made it more acceptable. There used to be a stigma associated with the word mastectomy, but not any more."

In some ways it's astonishing that this is where we are with cancer treatment in the 21st century. How has something as crude as chopping off body parts become relatively normalised? Just because the medical profession can now carry out good breast implants, is this what we should be offering in terms of "treatment" – bearing in mind that a reconstructed breast has no sensation and is often without nipples? And have we become so risk-averse that removing our breasts is preferable to living with the possibility that one day we might develop cancer?

Mokbel is right about the fear factor. The majority of women interviewed for this piece speak of nothing but the enormous relief the moment they came round from the anaesthetic. "The fear lifted instantly," says Helen Brown, who had a double mastectomy last year. "Just knowing I didn't have to face the dread of annual check-ups was hugely liberating."

Brown, who has breast cancer running in her family, remembers how mastectomies were done in the past. Her aunt, whose five older sisters all contracted breast cancer, had one 30 years ago. "In those days, it was all hushed tones, the big c-word, no one ever even mentioning your breasts," she says. "There was no reconstruction. Women were savaged by surgeons who didn't give a monkeys about their long-term care or looks. Stick a couple of pairs of socks in your bra and you'll be fine, they said. My aunt went from being quite a big lady to having literally no boobs at all. It was quite mutilating."

Nurse Helen Brown, 40,found a lump when I was 37: 'It was very weird; I had a dream that I'd found one and woke up and checked myself and there it was' (Anna Huix)

Dr Andrew Baildam, professor of breast surgery at Barts in London, was one of the first to carry out preventative mastectomies and reconstructions in the UK. "[Ten years ago] it was almost regarded as unethical," he says. "These are women who don't even have cancer. A lot of surgeons wouldn't do it. But as techniques have become more refined, it has become much more routine."

Baildam estimates that he carries out about 10 operations a year on women without cancer. The most frequent method is the one Jolie opted for, in which the breast tissue is removed and expanders are placed under the pectoral muscles. These little pockets are gradually filled with saline over a few weeks and once enough space is created, the liquid is drained off and implants are inserted. The other method is to take tissue from the stomach or back and use it in a reconstruction. The advantage of this is that, unlike implants, they don't have to be replaced every 10 to 15 years – but it does leave nasty scars.

"There are technical challenges associated with the surgery," says Dr Baildam. "These are women who haven't had cancer and want to look as close as they can to how they did before."

Which is why the increasing numbers of celebrities apparently cruising so easily through is problematic. Actress Kathy Bates took to Twitter to announce news of her double mastectomy. "I don't miss my breasts as much as I miss Harry's Law," she tweeted cheerfully of the TV series she'd been starring in. The singer Beverley Craven, meanwhile, breezily told the Evening Standard of her three daughters, who have a 50 per cent risk, that, "Once they've had babies and breastfed them, they will undergo double mastectomies" – as if their boobs are disposable parts designed to be shed once used.

"We need to be vigilant," says Mokbel. "We want to be sure women avoid over-estimating the benefits of having this procedure. Sometimes women develop nasty infections or have problems with the implants and end up with disfigurement of the breast. Also, because a reconstructed breast usually has no sensation, it can seriously affect psychosexual function."

A new study published in the American medical journal Annals of Internal Medicine in September confirms Mokbel's concerns. The research, carried out by Shoshana Rosenberg at the Dana-Farber Cancer Institute in Boston, discovered that increasing numbers of women with early-stage breast cancer are opting to remove not just the affected breast but the healthy one too. "It's particularly concerning in young women. They have the highest rates and we are trying to work out why," says Rosenberg. "Our study suggests the peace-of-mind factor is huge. Even though maybe they have only a very small chance of developing breast cancer in the healthy breast, for some women, any risk is too much."

Bridgid Nzekwu opted for a double mastectomy after she was diagnosed with breast cancer at the age of 42 and told she had a 25 per cent chance of developing cancer in the other breast. She insisted on having both breasts removed and went through a nine-hour operation in which excess fat was taken from her abdomen to build new ones. It took two weeks before she could stand up because of the tummy tuck, she now needs a further operation to repair some bulgy scar tissue, and currently she has no nipples – yet still, she says, she would tell any woman to do the same.

"I didn't feel comfortable living with unnecessary risk, and to me 25 per cent was unacceptable," she says. "Why would you hang around and wait for the cancer to come when you can just get rid of it? Once it was done I felt exhilarated. Now my risk is around 2 per cent."

While Nzekwu is very happy with her reconstruction, some of the women in Rosenberg's study were less so. Asking them how they felt after surgery, nearly a third said their confidence about their appearance was worse than they thought it would be, while 42 per cent said their sense of sexuality was worse than expected.

Broadcaster Bridgid Nzekwu, 43, says: 'One of the advantages of having a double mastectomy is that you get a much better result cosmetically' (Anna Huix)

"My fear after the Angelina Jolie experience is that a lot of women will step forward and say me too," says Dr Baildam. "For women of high risk, it is highly effective; we just need to be sure surgery is offered only in the right context."

Rosenberg agrees. "We are concerned about women who are not high risk who are deciding to do this," she says. "We need to address the underlying anxiety so these women don't do anything they regret."

Plus, concludes Mokbel, there is a lot that can be done to reduce risk before turning to the knife. Exercise routines and changes to diet can reduce the risk from 25 per cent to below 10 per cent. "I don't think we as doctors can refuse to do it; we just need to ensure women know it's a massive decision and don't take it lightly."

Helen Brown

40, nurse

"I found a lump when I was 37. It was very weird; I had a dream that I'd found one and woke up and checked myself and there it was, exactly where it was in the dream.

"I've got a family history of breast cancer, but even so, I still thought they would tell me it was a cyst or an old milk duct. But they said, 'It's come to you. You're going to need a mastectomy next week.' It was so fast. I felt like I'd jumped on a conveyor belt that I couldn't get off.

"My brain shut down. I totally lost control. A lot of cancer patients will say this – that the first day of diagnosis is the worst, the moment you hear your death knell. But then four days later the doctor came back and said it was benign. I couldn't believe it. I had told everyone I knew; I'd called my sister in Australia and made plans for my three children during the treatment.

"That was a turning point for me. I thought, 'There is no way I'm going to go back to check-ups to go through that again.' So I booked myself in for a double mastectomy and reconstruction.

"The fear lifted instantly. I remember waking up from the anaesthetic and thinking all that dread, it's all gone. I went from 85 per cent risk to 5 per cent. It was liberating. And as it turns out, there were some pre-cancerous cells there, so I feel completely justified. Now I have enviable boobs and I kept my nipples."

Heather Johnson

44, Pilates instructor

"My aunt was diagnosed with breast cancer at 38 and was dead by 43. It hit me hard. My mum was 58 when she was diagnosed. It came back twice; eventually she had a double mastectomy and we thought that was it. Seven years later they found a lump on her reconstructed breast, which is incredibly rare. The breast was removed but when she went for her six-month check they found it had spread to her liver and bones. She died two years ago.

"It was due to my mum's encouragement that I got a double mastectomy. As soon as I stopped breastfeeding my last child at the age of 32 I went and had a mammogram. I had some benign cysts but the doctor said to me, 'It's a matter of when, not if, these lumps become cancerous.'

" I sat down with my husband and said, 'I don't want to live with this fear.' Deciding on a double mastectomy wasn't difficult after what I'd witnessed with my mum and aunt.

"After the surgery I found it hard to breathe for a while and I certainly found it difficult to look at myself. I was without nipples for two years. You lose something so feminine about yourself.

"I hate it when people tell me how brave I've been. I took the easy way out. The women who fight cancer are the brave ones. I'm still amazed that women are so afraid to give up their breasts if cancer is the sure-fire alternative. I would do it again in a heartbeat."

Bridgid Nzekwu

43, broadcaster

"As a teenager I had Hodgkin's lymphoma; the treatment was two lots of chemotherapy and a month of daily radiotherapy. In 2007, it was discovered that people who had been through this treatment have a higher-than-normal risk of developing breast cancer. They called me in for annual breast screenings.

"In 2012, they realised a lump I had in my breast had become cancerous. Because I'd had such massive doses of radiotherapy in my teens, the hospital couldn't give me any more. The only option was to remove my breast.

"I said I wanted both breasts off now. I was 42 at the time and had a three-year-old; I wanted to eliminate my risk. They said it was completely healthy and there was no reason to remove it. So I transferred to another hospital and had both breasts removed and immediate reconstruction.

"One of the advantages of having a double mastectomy is that you get a much better result cosmetically. They look better if they are done at the same time and they are more likely to match. Also, because I'd been through cancer in my teens, I knew I just couldn't go through it again.

"Now, although I'm taking Tamoxifen [a hormonal therapy used to treat breast cancer], I'm in early-stage menopause; I'm having hot flushes and I'm trying to stave off the weight gain that goes with it. All of that is preferable to not being alive."

Breast cancer in numbers

1 in 8 women will be diagnosed with breast cancer in their lifetime

136 women a day were diagnosed with breast cancer in 2010

80% of women live for at least five years with breast cancer (it was 50 per cent in the 1970s)

18,000 mastectomies are performed by the NHS each year (up 50 per cent over the past decade)

By Zander Swinburne

For more: breakthrough.org.uk