This article is from the source 'guardian' and was first published or seen on . It last changed over 40 days ago and won't be checked again for changes.
You can find the current article at its original source at http://www.theguardian.com/society/2015/mar/24/women-angelina-jolie-choice-surgery-ovarian-cancer
The article has changed 2 times. There is an RSS feed of changes available.
Previous version
1
Next version
| Version 0 | Version 1 |
|---|---|
| ‘I had a ticking time bomb inside me’: four women who faced Angelina Jolie’s choice | ‘I had a ticking time bomb inside me’: four women who faced Angelina Jolie’s choice |
| (2 days later) | |
| Angelina Jolie made a promise two years ago, after undergoing a preventive double mastectomy. She would update the general public “with any information that could be useful, including about my next preventive surgery”. On Tuesday she made good on the promise, with an article in the New York Times in which she wrote about her decision to have her fallopian tubes and ovaries removed. Jolie carries the BRCA1 gene mutation, which greatly increases the risk of developing breast and/or ovarian cancer. She has made it her mission to spread understanding of this faulty version of the gene, and of the options available to women who carry it. BRCA1 and BRCA2 gene mutations have entered a sort of genetic hall of fame. Jolie’s disclosure of the first operation led to a sharp spike in the number of women seeking genetic testing for breast cancer; charities referred to the “Angelina Effect”. The equation is quite simple: Jolie is a powerful woman with a powerful body, a combination that helps to make her message powerful. | Angelina Jolie made a promise two years ago, after undergoing a preventive double mastectomy. She would update the general public “with any information that could be useful, including about my next preventive surgery”. On Tuesday she made good on the promise, with an article in the New York Times in which she wrote about her decision to have her fallopian tubes and ovaries removed. Jolie carries the BRCA1 gene mutation, which greatly increases the risk of developing breast and/or ovarian cancer. She has made it her mission to spread understanding of this faulty version of the gene, and of the options available to women who carry it. BRCA1 and BRCA2 gene mutations have entered a sort of genetic hall of fame. Jolie’s disclosure of the first operation led to a sharp spike in the number of women seeking genetic testing for breast cancer; charities referred to the “Angelina Effect”. The equation is quite simple: Jolie is a powerful woman with a powerful body, a combination that helps to make her message powerful. |
| Related: Angelina Jolie and ovarian cancer: the facts about screening and surgery | Related: Angelina Jolie and ovarian cancer: the facts about screening and surgery |
| Jolie’s case, of course, is distinctive. She has six children, three of whom are her biological children. She enjoys an apparently secure relationship, and is 10 years younger than her late mother was at the time of her ovarian cancer diagnosis. For every woman considering a preventive oophorectomy – the medical name for the removal of ovaries – these factors all need to be graded and weighed. The process, of balancing emotional and reproductive needs against the instinct for survival, and the categorisation of an essentially unknowable risk, is so complicated that counsellors and charities have developed a “risk tool” to help women judge their own needs. (See this one, for ovarian cancer.) | Jolie’s case, of course, is distinctive. She has six children, three of whom are her biological children. She enjoys an apparently secure relationship, and is 10 years younger than her late mother was at the time of her ovarian cancer diagnosis. For every woman considering a preventive oophorectomy – the medical name for the removal of ovaries – these factors all need to be graded and weighed. The process, of balancing emotional and reproductive needs against the instinct for survival, and the categorisation of an essentially unknowable risk, is so complicated that counsellors and charities have developed a “risk tool” to help women judge their own needs. (See this one, for ovarian cancer.) |
| Jana Witt, a research associate at King’s College London, created an Oophorectomy Decision Explorer for her PhD at Cardiff University, which evolved into a decision-making tool. “The coverage of Angelina Jolie has really influenced how people view preventive surgery,” she says, “but it is important to understand that it is really an option only for those women who are high risk. For the average women on the street it is something that wouldn’t be recommended. It’s important to consider who you are and what you want. It isn’t for everyone.” The women she spoke to for her research who had chosen preventive surgery expressed no regrets at their decision. Interestingly, the same was true of the women who opted for surveillance over surgery. Here are four accounts of women who have elected to have their ovaries removed, for differing reasons, and with differing effects. | |
| ‘I would do the same things and have the same surgeries again’ – Caroline Presho, 41 | ‘I would do the same things and have the same surgeries again’ – Caroline Presho, 41 |
| It was way back in 2006 that Caroline Presho first came across the BRCA1 gene mutation. Her Auntie Rene had tested positive and embarked on a “mission to educate the family”, supplying the womenfolk with letters from a consultant at the Royal Marsden to be handed to their GPs. Presho took hers along, not really understanding its contents. This was in the days before Angelina Jolie had made famous BRCA1/2 gene mutations. The doctor brightened when he read it. “I’ve just been on a course about this,” he said. “I don’t think you’ll have one. Go home and stop worrying.” | It was way back in 2006 that Caroline Presho first came across the BRCA1 gene mutation. Her Auntie Rene had tested positive and embarked on a “mission to educate the family”, supplying the womenfolk with letters from a consultant at the Royal Marsden to be handed to their GPs. Presho took hers along, not really understanding its contents. This was in the days before Angelina Jolie had made famous BRCA1/2 gene mutations. The doctor brightened when he read it. “I’ve just been on a course about this,” he said. “I don’t think you’ll have one. Go home and stop worrying.” |
| Auntie Rene died in June 2007, and within a week, Caroline’s father had died, too. Caroline herself was pregnant with her third child. She thought her father had died of a lung infection – until the phone call came from a consultant geneticist and the family learned that one of Caroline’s father’s last actions had been to get himself tested for the BRCA1 mutation. He had known all along he had lung cancer. The result was positive. Caroline was finally spurred into action. | Auntie Rene died in June 2007, and within a week, Caroline’s father had died, too. Caroline herself was pregnant with her third child. She thought her father had died of a lung infection – until the phone call came from a consultant geneticist and the family learned that one of Caroline’s father’s last actions had been to get himself tested for the BRCA1 mutation. He had known all along he had lung cancer. The result was positive. Caroline was finally spurred into action. |
| Related: Angelina Jolie reveals she had ovaries removed after cancer scare | Related: Angelina Jolie reveals she had ovaries removed after cancer scare |
| “I went with my sister to be tested,” she says. “I was 33 and she was 29. Before we went through the door we decided if one of us was positive, we both needed to be positive. It wouldn’t be fair otherwise.” When the doctor gave them the news – they were positive – “We both went: ‘Yes!’” | “I went with my sister to be tested,” she says. “I was 33 and she was 29. Before we went through the door we decided if one of us was positive, we both needed to be positive. It wouldn’t be fair otherwise.” When the doctor gave them the news – they were positive – “We both went: ‘Yes!’” |
| In the years since, Caroline has had, in this order: a mastectomy, a fourth baby and an oophorectomy (surgical removal of one, or both, of the ovaries). “I would do the same things again. I would have the same surgeries again.” And the fourth baby again, she says, even though each child has a 50/50 chance of inheriting the BRCA1 gene. | In the years since, Caroline has had, in this order: a mastectomy, a fourth baby and an oophorectomy (surgical removal of one, or both, of the ovaries). “I would do the same things again. I would have the same surgeries again.” And the fourth baby again, she says, even though each child has a 50/50 chance of inheriting the BRCA1 gene. |
| “I really struggled with the decision to get pregnant: I’m potentially giving this mutation to my child. But it’s not life-limiting. They’re not going to be in pain for ever. It’s something that, if they choose, they can have genetic testing for. In 20 years, things will be so different. I thought: it’s not such a cruel decision.” | “I really struggled with the decision to get pregnant: I’m potentially giving this mutation to my child. But it’s not life-limiting. They’re not going to be in pain for ever. It’s something that, if they choose, they can have genetic testing for. In 20 years, things will be so different. I thought: it’s not such a cruel decision.” |
| Caroline now carries on the spirit of her Auntie Rene’s work, by running the BRCA Umbrella website and spreading the word for Ovarian Cancer Action. She says she would love to thank Rene, and Jolie, for “putting it out there”. Caroline’s sister opted for surveillance rather than surgery and Caroline clearly feels uneasy about their different decisions. “It upsets me, because I want her to be safe. I know it’s her choice. I would never tell her what to do, but it worries me. I feel my dad left me the best legacy ever. Getting tested was his parting gift to me.” | Caroline now carries on the spirit of her Auntie Rene’s work, by running the BRCA Umbrella website and spreading the word for Ovarian Cancer Action. She says she would love to thank Rene, and Jolie, for “putting it out there”. Caroline’s sister opted for surveillance rather than surgery and Caroline clearly feels uneasy about their different decisions. “It upsets me, because I want her to be safe. I know it’s her choice. I would never tell her what to do, but it worries me. I feel my dad left me the best legacy ever. Getting tested was his parting gift to me.” |
| ‘I was bald with no boobs and I still felt feminine’ – Rachel Ferry, 42 | ‘I was bald with no boobs and I still felt feminine’ – Rachel Ferry, 42 |
| Rachel Ferry was tested for the BRCA1 gene mutation last February, after being diagnosed with breast cancer. But she had no need to wait for the result. “My father passed away 10 years ago. His mother and my auntie had already passed away. I just knew in my heart,” she says. | Rachel Ferry was tested for the BRCA1 gene mutation last February, after being diagnosed with breast cancer. But she had no need to wait for the result. “My father passed away 10 years ago. His mother and my auntie had already passed away. I just knew in my heart,” she says. |
| Even though chemotherapy was successfully shrinking the tumour in Rachel’s breast, making her a candidate for a lumpectomy, the BRCA1 mutation result came back positive and cast her decision-making in a fresh light. She chose a double mastectomy with no reconstructive surgery (because she was going straight into a course of radiotherapy). “I thought, my breasts are trying to kill me. I’m not willing to let this happen.” Her children, Hannah and Callum, were three and six. “You face your own mortality.” The BRCA1 mutation result also meant that her chance of developing ovarian cancer had jumped from one in 54 to one in two. “I felt like I had a ticking time bomb inside me. I thought, I’m not going to sit around waiting for my ovaries to turn on me.” In the space of 10 months, she had gone from diagnosis to the removal of both breasts, ovaries and fallopian tubes. | Even though chemotherapy was successfully shrinking the tumour in Rachel’s breast, making her a candidate for a lumpectomy, the BRCA1 mutation result came back positive and cast her decision-making in a fresh light. She chose a double mastectomy with no reconstructive surgery (because she was going straight into a course of radiotherapy). “I thought, my breasts are trying to kill me. I’m not willing to let this happen.” Her children, Hannah and Callum, were three and six. “You face your own mortality.” The BRCA1 mutation result also meant that her chance of developing ovarian cancer had jumped from one in 54 to one in two. “I felt like I had a ticking time bomb inside me. I thought, I’m not going to sit around waiting for my ovaries to turn on me.” In the space of 10 months, she had gone from diagnosis to the removal of both breasts, ovaries and fallopian tubes. |
| “I thought we were finished with children,” she says, “but thinking you’re finished and knowing you can’t have another are two very different feelings. The hard thing about the ovaries was that it takes away your decision to have more. From a femininity point of view, I don’t have any issues. I’m very loved. I’m totally feminine. I was bald with no boobs and I still felt feminine. I’m a woman inside.” | “I thought we were finished with children,” she says, “but thinking you’re finished and knowing you can’t have another are two very different feelings. The hard thing about the ovaries was that it takes away your decision to have more. From a femininity point of view, I don’t have any issues. I’m very loved. I’m totally feminine. I was bald with no boobs and I still felt feminine. I’m a woman inside.” |
| For the first time in months, she has stopped seeing herself as a patient. She is training for a triathlon to fundraise for Breast Cancer Care and, in terms of the risk of developing breast or ovarian cancer, she describes herself as “back to a normal person”, although, of course, the odds have been improved at extraordinary physical cost. “I’m feeling so fantastic,” she says. Rachel has three keyhole scars. “If I’m standing naked, I’ve got a smile.” | For the first time in months, she has stopped seeing herself as a patient. She is training for a triathlon to fundraise for Breast Cancer Care and, in terms of the risk of developing breast or ovarian cancer, she describes herself as “back to a normal person”, although, of course, the odds have been improved at extraordinary physical cost. “I’m feeling so fantastic,” she says. Rachel has three keyhole scars. “If I’m standing naked, I’ve got a smile.” |
| ‘It’s not going to absolutely save my life but I’ll live longer’ – Katherine Marsland, 41 | ‘It’s not going to absolutely save my life but I’ll live longer’ – Katherine Marsland, 41 |
| “I’m really pleased,” Katherine Marsland says. She is in the Christie hospital in Manchester, where her consultant has just confirmed the date of her operation: 8 June. “It’s quite a strange place to be in. Having my ovaries removed. There’s no way I can have children now. But for me, it’s just another thing that’s going to potentially save my life.” | “I’m really pleased,” Katherine Marsland says. She is in the Christie hospital in Manchester, where her consultant has just confirmed the date of her operation: 8 June. “It’s quite a strange place to be in. Having my ovaries removed. There’s no way I can have children now. But for me, it’s just another thing that’s going to potentially save my life.” |
| The operation was Katherine’s own idea. She has secondary breast cancer and some of the drugs that treat it are “only accessible to postmenopausal women”. Removing ovaries is a fast ticket to the menopause. It was an easy conversation with her oncologist. She suggested it, and he said: “Good idea.” Without ovaries, the hormone-receptive cancer will no longer thrive. | The operation was Katherine’s own idea. She has secondary breast cancer and some of the drugs that treat it are “only accessible to postmenopausal women”. Removing ovaries is a fast ticket to the menopause. It was an easy conversation with her oncologist. She suggested it, and he said: “Good idea.” Without ovaries, the hormone-receptive cancer will no longer thrive. |
| Related: Angelina Jolie column about surgery heralded by top ovarian cancer doctors | Related: Angelina Jolie column about surgery heralded by top ovarian cancer doctors |
| Katherine is 41. In the time between her single mastectomy three years ago and the forthcoming operation to remove her ovaries, her relationship with her body has changed hugely. “In some ways, with the mastectomy they put too much emphasis on what you’re going to look like at the end. They try and recreate the perfect boob. I did get caught up in that. I was really happy with my body before I had cancer. I didn’t want to lose that body. Now I wish I’d just had the damn thing chopped off. I’ve had so many operations. I’m covered in scars. I’d be lying if I said I don’t care what I look like. I’d love to have my old body back. But now I just want to live.” | Katherine is 41. In the time between her single mastectomy three years ago and the forthcoming operation to remove her ovaries, her relationship with her body has changed hugely. “In some ways, with the mastectomy they put too much emphasis on what you’re going to look like at the end. They try and recreate the perfect boob. I did get caught up in that. I was really happy with my body before I had cancer. I didn’t want to lose that body. Now I wish I’d just had the damn thing chopped off. I’ve had so many operations. I’m covered in scars. I’d be lying if I said I don’t care what I look like. I’d love to have my old body back. But now I just want to live.” |
| The operation will throw her “into early menopause and all the horrible things that go with that - it can affect bone density, make your skin get wrinkly, give you hot flushes. It’s going to affect Angelina Jolie’s body the same way it affects other people’s,” she says. It is a comforting thought. “Or it probably won’t.” | The operation will throw her “into early menopause and all the horrible things that go with that - it can affect bone density, make your skin get wrinkly, give you hot flushes. It’s going to affect Angelina Jolie’s body the same way it affects other people’s,” she says. It is a comforting thought. “Or it probably won’t.” |
| At 38, Katherine hoped to have children, but the cancer came first, and now children are the last thing on her mind. It is all about survival. She has no partner, and lives with friends in Manchester, where she hand-makes kilts and finds support on the Facebook page of the Younger Breast Cancer Network. “I was saying to my friends, ‘They basically chop off all the bits that make you a woman,’” she says. But still, the oophorectomy feels less emotionally taxing than the mastectomy and she is happy to be having it. “It will make me feel good, psychologically. I will feel that the main source of fuel has been removed. It’s not going to absolutely save my life, but it is going to make me live longer.” | At 38, Katherine hoped to have children, but the cancer came first, and now children are the last thing on her mind. It is all about survival. She has no partner, and lives with friends in Manchester, where she hand-makes kilts and finds support on the Facebook page of the Younger Breast Cancer Network. “I was saying to my friends, ‘They basically chop off all the bits that make you a woman,’” she says. But still, the oophorectomy feels less emotionally taxing than the mastectomy and she is happy to be having it. “It will make me feel good, psychologically. I will feel that the main source of fuel has been removed. It’s not going to absolutely save my life, but it is going to make me live longer.” |
| ‘I got to the point of, Oh, get it out of me’ – Vivien Bartlett, 64 | ‘I got to the point of, Oh, get it out of me’ – Vivien Bartlett, 64 |
| Vivien Bartlett had her ovaries removed in 1999 as a preventive measure, although 16 years on she is still not entirely clear about why. This was only nine years after the first evidence for the BRCA1 gene had been discovered but the difficulty of diagnosing ovarian cancer was clearly in her doctor’s thinking. Vivien had had fibroids, undergone an examination of the uterus for precancerous cells, and been in a lot of pain. “I got to the point of, ‘Oh, get it out of me!’ So she visited a consultant, who told her: “Well, you have to have a hysterectomy and we’ll have to take out your tubes and ovaries as well, because if you get ovarian cancer we can’t do anything about it and you’ll die.” | Vivien Bartlett had her ovaries removed in 1999 as a preventive measure, although 16 years on she is still not entirely clear about why. This was only nine years after the first evidence for the BRCA1 gene had been discovered but the difficulty of diagnosing ovarian cancer was clearly in her doctor’s thinking. Vivien had had fibroids, undergone an examination of the uterus for precancerous cells, and been in a lot of pain. “I got to the point of, ‘Oh, get it out of me!’ So she visited a consultant, who told her: “Well, you have to have a hysterectomy and we’ll have to take out your tubes and ovaries as well, because if you get ovarian cancer we can’t do anything about it and you’ll die.” |
| There is no family history of cancer. She remains unsure why she was deemed at risk of developing ovarian cancer: she was too shocked to ask questions, the operation deemed too urgent to give her time to reflect. In the corridor outside the consultant’s office, she broke down and cried. | There is no family history of cancer. She remains unsure why she was deemed at risk of developing ovarian cancer: she was too shocked to ask questions, the operation deemed too urgent to give her time to reflect. In the corridor outside the consultant’s office, she broke down and cried. |
| “I’d never had children, and never wanted children. I was very much into my career. In fact,” she says – she has a gentle, matter-of-fact way of talking – “I have had three abortions, because that’s how it went.” | “I’d never had children, and never wanted children. I was very much into my career. In fact,” she says – she has a gentle, matter-of-fact way of talking – “I have had three abortions, because that’s how it went.” |
| After the operation, Vivien learned that, along with her organs, three fibroids the size of grapefruits had been removed. Three, she thought. Surely not a coincidence: three abortions, three fibroids. “I gave myself such a hard time. I made it up that these were scars from the abortions. I did give myself a lot of grief.” She was 49. Too late for children. She had never wanted them, but after the hysterectomy and oophorectomy, “when I had the possibility taken away from me, I became completely regretful. It was a psychological thing. I felt I’d let my female side down totally.” | After the operation, Vivien learned that, along with her organs, three fibroids the size of grapefruits had been removed. Three, she thought. Surely not a coincidence: three abortions, three fibroids. “I gave myself such a hard time. I made it up that these were scars from the abortions. I did give myself a lot of grief.” She was 49. Too late for children. She had never wanted them, but after the hysterectomy and oophorectomy, “when I had the possibility taken away from me, I became completely regretful. It was a psychological thing. I felt I’d let my female side down totally.” |
| The operation sparked – or “coincided with” – a midlife crisis. Vivien gave up her job in PR and advertising and in 2002 entered a convent, where she remained for seven years. She now lives in retirement in rural Wales. And although she says she is reporting all this “as history”, she is unsure if she ever got rid of that feeling that she was being punished for her choices. “I’ve come to terms with it,” she says, “but I tend not to have not a lot of time for mothers with young children.” It is just too painful. | The operation sparked – or “coincided with” – a midlife crisis. Vivien gave up her job in PR and advertising and in 2002 entered a convent, where she remained for seven years. She now lives in retirement in rural Wales. And although she says she is reporting all this “as history”, she is unsure if she ever got rid of that feeling that she was being punished for her choices. “I’ve come to terms with it,” she says, “but I tend not to have not a lot of time for mothers with young children.” It is just too painful. |
Previous version
1
Next version