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| Angelina Jolie's mastectomy account raises awareness of gene testing | Angelina Jolie's mastectomy account raises awareness of gene testing |
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| It was an extraordinarily public declaration of an incredibly private experience. But when Angelina Jolie took to the comment pages of the New York Times to declare that she had undergone a double mastectomy, she spearheaded a new awareness of gene testing as a guard against the possibility of breast cancer. | It was an extraordinarily public declaration of an incredibly private experience. But when Angelina Jolie took to the comment pages of the New York Times to declare that she had undergone a double mastectomy, she spearheaded a new awareness of gene testing as a guard against the possibility of breast cancer. |
| Doctors and medical experts specialising in the disease welcomed her announcement as a way of raising the profile of the test, but warned that for most women it would not be relevant as the gene mutation she has inherited is so rare. | |
| In her account, published on Wednesday, Jolie appealed for greater access for gene testing and lifesaving preventive treatment and encourages women to explore their options. | In her account, published on Wednesday, Jolie appealed for greater access for gene testing and lifesaving preventive treatment and encourages women to explore their options. |
| The actor has a defective gene, BRCA1, which doctors told her increased her risk of developing breast cancer to 87%; it also increased her risk of ovarian cancer. | |
| The surgery, which began in February, had reduced Jolie's risk of breast cancer to less than 5%. "I can tell my children that they don't need to fear they will lose me to breast cancer," she wrote. "It is reassuring that they see nothing that makes them uncomfortable. They can see my small scars and that's it. Everything else is just Mommy, the same as she always was. And they know that I love them and will do anything to be with them as long as I can. | |
| "On a personal note, I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity." | |
| Jolie wrote of losing her own mother to cancer, at the age of 56, after a decade-long fight: "She held out long enough to meet the first of her grandchildren and to hold them in her arms. But my other children will never have the chance to know her and experience how loving and gracious she was." | Jolie wrote of losing her own mother to cancer, at the age of 56, after a decade-long fight: "She held out long enough to meet the first of her grandchildren and to hold them in her arms. But my other children will never have the chance to know her and experience how loving and gracious she was." |
| The 37-year-old, who has six children – three adopted and three with Brad Pitt, who was by her side for "every minute of the surgeries" – finished three months of medical procedures on 27 April. She said she first had "nipple delay" to maximise the chances of saving her nipples, before breast tissue removal and, nine weeks later, reconstruction. | The 37-year-old, who has six children – three adopted and three with Brad Pitt, who was by her side for "every minute of the surgeries" – finished three months of medical procedures on 27 April. She said she first had "nipple delay" to maximise the chances of saving her nipples, before breast tissue removal and, nine weeks later, reconstruction. |
| Jolie wrote: "I choose not to keep my story private because there are many women who do not know that they might be living under the shadow of cancer. Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of." | Jolie wrote: "I choose not to keep my story private because there are many women who do not know that they might be living under the shadow of cancer. Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of." |
| Wendy Watson, who founded the UK's National Hereditary Breast Cancer Helpline, welcomed Jolie's decision to write publicly about her operation. "It is excellent, because it is the highest profile you can get for it," she said. "It raises the profile for other women to look to if they have a family history and would benefit from being screened more frequently, or having surgery or having a genetic test." | |
| The UK foreign secretary, William Hague, who visited refugee camps in the Democratic Republic of the Congo with Jolie in March, said she would be "an inspiration to many". Hague said: "She gave no sign that she was undergoing such treatment and I think she's a very brave lady, not only to carry on with her work so well during such treatment, but also to write about it now and talk about it." | |
| But Dr Marisa Weiss, who runs an online advice and information service on breast cancer based in Ardmore, Pennsylvania, pointed out that only 29% of cancers in women start in the breast and within that group only 5% to 10% of women are carriers of high-risk single genes such as the one for which Jolie tested positive, BRCA1. | |
| Weiss said that for most women, the biggest factors are not hereditary but relate to how they lead their lives: weight, alcohol consumption, smoking, physical activity. | |
| She anticipated that the interest level in genetic testing would soar after Jolie's intervention, but in many cases it would be inappropriate. "Whenever a celebrity steps forward that everybody knows like Angelina Jolie people are going to relate to her and think they have the same problem even though their situation is totally unconnected. For a time people are going to say 'I want the test that Angelina had'," Weiss said. | |
| That could have financial implications. In the US it costs $3,000 or more to have the genetic test for BRCA1 or the related BRCA2. Where there is a strong family history of breast or ovarian cancer, health insurance firms are likely to pay for the procedure, but where none exists the individual will be expected to pay. | |
| Dr Richard Francis, head of research at Breakthrough Breast Cancer, said that faults in the BRCA1 gene, which on average put women at a 65% risk of developing breast cancer, were rare and in most cases were linked to family history. | Dr Richard Francis, head of research at Breakthrough Breast Cancer, said that faults in the BRCA1 gene, which on average put women at a 65% risk of developing breast cancer, were rare and in most cases were linked to family history. |
| He cautioned that a mastectomy would not necessarily be the appropriate treatment for everyone with the gene. "For women like Angelina it's important that they are made fully aware of all the options that are available, including risk-reducing surgery and extra breast screening," he said. | |
| "Though Angelina decided that a preventative mastectomy was the right choice for her, this may not be the case for another woman in a similar situation. We urge anyone who is worried about their risk of breast cancer to talk it through with their doctor. | |
| The genetic short straw 'We were resigned to having it' | |
| Angelina Jolie's decision to have a prospective double mastectomy will resonate with many other women who have discovered they have drawn a genetic short straw. | |
| Caroline Presho, 39, inherited the BRCA2 gene through her father. His mother had died of breast cancer in her 40s and his aunt also had the disease. His sister had ovarian cancer and urged Presho and her sister to have genetic testing. "We thought it was a lot of old nonsense and forgot about it. But a few years later when she was really ill, she told us again, so in 2006 I went to my GP with a letter she sent me. But he said: 'No, I don't think you will have it. Go away.' I took his word as gospel, did nothing about it." | |
| But in 2007, after her father died of lung cancer, Presho, who lives in Potters Bar, Hertfordshire, found he had tested positive for the faulty gene. "At that time, they were not screening until you were 35, and I was 33, but then I got myself a bit stressed and I was Googling like mad. The moment I turned 35, I wanted screening and surgery right away." | |
| When a shadow was found on one of her breasts, she was called in for an ultrasound. "I realised I could not live like this. I was married with three children and had breast-fed all three. I was going to have no more children and felt my family was complete. Now I had this knowledge, was it wrong to have another child when there was a chance of passing [the gene] on?" | |
| She had a double mastectomy and immediate reconstruction in November 2009, and has since had another child. Emma, from Bristol, found she had the BRCA2 mutation in 2008, after her mother was diagnosed with advanced breast cancer at 59. "She was tested first and when we found out that she had the mutation there was no doubt in my mind that I would have the blood test to determine whether or not I had inherited it from her. I finally took the plunge in December 2012 at the age of 36. I had immediate reconstruction with implants and I was lucky to be able to keep my nipples. My amazing surgeons did a fantastic job." | |
| Emma said her mastectomy turned out not to be strictly preventative as They The medics found a small amount of DCIS (early stage breast cancer, or pre-cancer) in the tissue they had removed. "Fortunately no further treatment was needed" says Emma. | |
| Although she has had necrosis and delayed healing in the nipple on one breast meaning more treatment and surgery, she said: "I have no regrets. I'm no longer living in the shadow of breast cancer and I feel so lucky and grateful to have been able to take preventative action, a luxury that my mum, who died in 2010, did not have." | |
| Charlotte Pittuck, 30, from Great Dunmow, Essex, who is preparing for a double mastectomy, was 26 and pregnant when her father's sister in Australia was diagnosed with breast cancers, and there was a family history. Tests on her aunt, brother, sister and herself showed they all had the BRCA2 gene. "My sister and I had resigned ourselves to the fact we would have it. We both knew if we had the gene, we would opt for the operation. We felt 85% was such a high chance of getting breast cancer at some stage, we didn't want to risk it. | |
| "I decided I would like to have a second child in quick succession, have the operation and recover and be able to have another child. In fact, child number two was twins and I had three children in 18 months. I breast-fed all three I have had all my appointments … I will be glad when the operation is done." James Meikle and Sarah Ridley |