For Sharon Osbourne it was "a no-brainer" to have her breasts removed in order to reduce her risk of getting breast cancer. Her mind was made up when a genetic test revealed that she had inherited one of the genes that predispose women carrying it to developing the disease. The former X Factor judge did not want to fight cancer again, having survived colon cancer in 2002, and also wanted to see her seven-month-old granddaughter Pearl grow up. "I've had cancer before and I didn't want to live under that cloud. I decided to just take everything off and had a double mastectomy," 60-year-old Osbourne told Hello! "For me, it wasn't a big decision … I didn't want to live the rest of my life with that shadow hanging over me."
About 18,000 mastectomies are performed each year in England, and another 39,000 women have other types of breast surgery, such as lumpectomies. "We call what Sharon Osbourne has had 'risk-reducing surgery' or a 'prophylactic mastectomy'," says Dr Caitlin Palframan, policy manager at the charity Breakthrough Breast Cancer. "We don't call it 'preventative' or even 'pre-emptive' surgery, because there's a risk you may still get breast cancer despite the surgery. Nothing is completely preventative."
There are no official figures for the number of women who have the operation for the same reason as Osbourne. "I would think it's about 1,000-1,200," says Andrew Baildam, professor of breast surgery at Barts hospital in London. "Ten or 12 years ago it was a highly controversial operation. It was considered almost unethical. But NHS regional centres [which perform the surgery] have made it more routine. Techniques have become more refined, especially in breast reconstruction, which most women opt for."
The NHS tests about 7,500 women a year for faulty BRCA1 and BRCA2 genes which increase the risk of breast or ovarian cancer. Professor Diana Eccles works at a regional genetic testing service in Southampton, one of 35 such centres in the UK. Around 1,500 women from Dorset, Hampshire, the Isle of Wight and southern Wiltshire are tested there each year for different types of cancer. About 800 of these women may go on to develop breast cancer – the UK's commonest form of cancer, claiming 12,000 lives a year.
"The women we test for breast cancer are aged between 16 and 76. The younger the age at which breast cancer has occurred in their family, and the greater the number of relatives who have had it, the more likely there will be a genetic link," says Eccles.
A woman whose mother or father carries a faulty gene has a 50% chance of also having it. The presence of a BRCA1 or BRCA2 mutation means a carrier is much more likely to develop breast or ovarian cancer, though BRCA2 involves a slightly lower risk than BRCA1. The lifetime risk of a carrier of a faulty BRCA1 carrier getting breast cancer can be as high as 60-80%.
Up to 20% of the patients Eccles tests for BRCA1 or BRCA2 turn out to be positive. She estimates that 30-40% of them – usually women in their 30s and 40s – go on to have a mastectomy. "If we find an altered code that damages the protein, we can then offer a test to other family members who want to know their risk. We can tell them roughly what their risk of getting breast cancer might be," says Eccles. "It's never an easy decision, it's very personal. While many women choose to have that operation when they know they are at high risk, a majority don't."
Those who do not can choose to start breast screening, if they are under 50, and undergo annual MRI scans in addition to the more usual mammography. "The main reason women end up having the operation is so that they're no longer anxious that they will develop breast cancer. The downside is that it is a mastectomy, so however good the reconstruction, it's not like having your own breasts. It's a major operation, potentially lasting all day if it's a bilateral mastectomy, as most are." Every woman considering the procedure undergoes counselling.
Tracey Barraclough tested positive for faulty BRCA1 in 1998. "I had up to an 85% chance of developing breast cancer and up to 60% chance of developing ovarian cancer," she recalls. She was devastated but not surprised as her mother, grandmother and great-grandmother had all died of ovarian cancer in their 50s. Four months later she had her womb and ovaries removed, to reduce her cancer risk. But she decided not to lose her breasts. "I ignored the fact that I had a genetic predisposition to breast cancer."
A year later, though, she changed her mind and had a double mastectomy. "Deciding to embark on that was the loneliest and most agonising journey of my life. My son Josh was five at the time and I wanted to live for him. I didn't want him to grow up without a mum." It was, she recalls, "an enormously difficult decision, based purely on statistics rather than emotion I was in this bizarre situation whereby there was nothing wrong with me but I was still planning to have my breasts amputated.".
How does she feel now, 13 years on? "I'm 100% happy. It was the right thing for me. I feel that losing my mother, grandmother and great-grandmother hasn't been in vain," she says.
• Only a small minority of women have faulty BRCA genes. But all women can be breast aware. Text TLC to 84424 for Breakthrough Breast Cancer's free, handy breast awareness guide. (Standard network charges apply).
• This article was amended on 12 November 2012 to make clear that it is the presence of a faulty BRCA gene, rather than the gene itself, that predisposes for cancer. The original article also said a woman whose father carried the gene had a 25% chance of also having it, but the risk rose to 50% if her mother did. A woman has a 50% chance of inheriting a faulty BRCA gene if either her mother or her father is a carrier.
