Este é o artigo original escrito por Angelina Jolie e publicado no The New York Times, para quem quiser conferir o que exatamente ela disse que gerou toda a discussão que levou a meu artigo anterior. (Os grifos são meus.) Ao final há dois artigos relacionados, também retirados do The New York Times, que discutem a questão de forma civilizada.
MY MOTHER fought cancer for almost a decade and died at 56. 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.
We often speak of “Mommy’s mommy,” and I find myself trying to explain the illness that took her away from us. They have asked if the same could happen to me. I have always told them not to worry, but the truth is I carry a “faulty” gene, BRCA1, which sharply increases my risk of developing breast cancer and ovarian cancer.
My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman.
Only a fraction of breast cancers result from an inherited gene mutation. Those with a defect in BRCA1 have a 65 percent risk of getting it, on average.
Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much I could. I made a decision to have a preventive double mastectomy. I started with the breasts, as my risk of breast cancer is higher than my risk of ovarian cancer, and the surgery is more complex.
On April 27, I finished the three months of medical procedures that the mastectomies involved. During that time I have been able to keep this private and to carry on with my work.
But I am writing about it now because I hope that other women can benefit from my experience. Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness. But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action.
My own process began on Feb. 2 with a procedure known as a “nipple delay,” which rules out disease in the breast ducts behind the nipple and draws extra blood flow to the area. This causes some pain and a lot of bruising, but it increases the chance of saving the nipple.
Two weeks later I had the major surgery, where the breast tissue is removed and temporary fillers are put in place. The operation can take eight hours. You wake up with drain tubes and expanders in your breasts. It does feel like a scene out of a science-fiction film. But days after surgery you can be back to a normal life.
Nine weeks later, the final surgery is completed with the reconstruction of the breasts with an implant. There have been many advances in this procedure in the last few years, and the results can be beautiful.
I wanted to write this to tell other women that the decision to have a mastectomy was not easy. But it is one I am very happy that I made. My chances of developing breast cancer have dropped from 87 percent to under 5 percent. I can tell my children that they don’t need to fear they will lose me to breast cancer.
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.
I am fortunate to have a partner, Brad Pitt, who is so loving and supportive. So to anyone who has a wife or girlfriend going through this, know that you are a very important part of the transition. Brad was at the Pink Lotus Breast Center, where I was treated, for every minute of the surgeries. We managed to find moments to laugh together. We knew this was the right thing to do for our family and that it would bring us closer. And it has.
For any woman reading this, I hope it helps you to know you have options. I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices.
I acknowledge that there are many wonderful holistic doctors working on alternatives to surgery. My own regimen will be posted in due course on the Web site of the Pink Lotus Breast Center. I hope that this will be helpful to other women.
Breast cancer alone kills some 458,000 people each year, according to the World Health Organization, mainly in low- and middle-income countries. It has got to be a priority to ensure that more women can access gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live. The cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women.
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. It is my hope that they, too, will be able to get gene tested, and that if they have a high risk they, too, will know that they have strong options.
Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.
Angelina Jolie is an actress and director.
Reacting to Angelina Jolie’s Breast Cancer News
Here’s something I never imagined: that my name would be associated with Angelina Jolie’s. But because of a recent cover article I wrote for the magazine, “Our Feel-Good War Against Breast Cancer,” I’ve been deluged by questions about her decision, which she revealed in an op-ed yesterday, to have a preventive double mastectomy.
My heart goes out to Jolie, who learned that she carries a BRCA1 genetic mutation that drastically raises her risk of breast and ovarian cancers. That’s the Cliffs Notes version — if you’re among those with a suspected mutation, you should dive into the research, understand the impact of the range of interventions (removing ovaries, removing breasts, surveillance). There are no “good” choices in such cases: only bad and worse ones. Making them in Jolie’s situation, when your own mom has died of cancer, is even harder.
The discovery of BRCA mutations was big news when I learned I had breast cancer in 1997. Because I was so young at the time, because one of my aunts died of ovarian cancer at age 54 and because there is a somewhat higher incidence of mutations among Ashkenazi Jews, I decided to go through genetic counseling myself at the University of California, San Francisco. Computer models put me at a 90 percent probability of having the same mutation as Jolie. Nonetheless, I put off testing for 10 years. Part of that was because I knew I was at high risk for breast cancer — given that I’d already had it — and I wasn’t sure how the results would change anything. After I gave birth to my daughter, though, I decided it was time. If I had a mutation, I planned, at the very least, to remove my ovaries.
To everyone’s surprise, I ended up testing negative. But that doesn’t mean I don’t have a genetic mutation — I probably do. I just don’t have one that is known. Because of that, my doctors can’t truly calculate my future risk of a new cancer. Is it high? Is it low? Is the cancer I’m at risk for deadly or treatable? And there are no specific recommendations on how I should proceed. Grappling with that ambiguity was difficult. I got there, though, and made my peace. Most of the time, I try to live fully with whatever time and body I have.
Given her test results, Jolie’s decision is completely medically defensible. It’s based on assessments, testing and her own personal tolerance for risk (someone else may have made a different choice, and that would also be defensible). She also happens to be an international celebrity and major sex symbol who needed to get out in front of the story and talk about her bilateral mastectomy before it became gossip. She was right not to be perceived as hiding it.
My concern going forward is that people remember that Jolie is not a woman of average risk. She is not even a woman of somewhat elevated risk. She is, sadly, a woman at very high risk of cancer, one with a genetic predisposition and a family history of deadly disease. Only .1 percent to .6 percent of the general population have the mutation Jolie carries (though everyone probably has mutations that predispose them to something). The rate among Ashkenazi Jews is about 1 percent. That means that having a mom who had breast cancer, for instance, especially if she was older when given her diagnosis, especially if her tumor was low-grade, is not an indication of a mutation in your family nor necessarily a reason to test — or to panic.
We have to be careful not to conflate Jolie’s situation and choices with those of an average woman or even with those of a woman who receives a diagnosis of low-grade breast cancer or ductal carcinoma in situ (D.C.I.S.) — a kind of “precancer” in which abnormal cells are found in the milk-producing ducts. Preventive double mastectomies among women in that latter group have shot up by 188 percent since the late-1990s. The steepness of the rise suggests those operations were driven less by medical advice than by women’s exaggerated sense of risk of getting a new cancer in the other breast. According to one study, such women believed that risk to be more than 30 percent over 10 years when it was actually closer to 5 percent.
I am concerned that the coverage of Jolie’s decision, if not handled carefully, will add fuel to a culture of fear, to a misunderstanding of risk that could compromise women’s health choices. Having a mastectomy, I am here to tell you, is not like getting a haircut. It’s a huge ordeal. And reconstruction, while it can look great, will never have sensation. Not ever again.
So before removing her breasts, a woman should (as I’m sure Jolie did) have reputable counseling by a specialist. She should understand her personal risk of future disease. She should know that many breast cancers are survivable, that the disease is not necessarily a death sentence. She should take her time, if she has such a luxury. Knowledge is power: before you remove a breast, be sure you are fully informed.
Jolie’s Disclosure of Preventive Mastectomy Highlights Dilemma
By DENISE GRADY, TARA PARKER-POPE and PAM BELLUCK
One of the defining moments in the history of breast cancer occurred in 1974 when the first lady, Betty Ford, spoke openly about her mastectomy, lifting a veil of secrecy from the disease and ushering in a new era of breast cancer awareness.
Now four decades later, another leading lady — the actress Angelina Jolie — has focused public attention on breast cancer again, but this time with an even bolder message: A woman at genetic risk should feel empowered to remove both breasts as a way to prevent the disease. Ms. Jolie revealed on Tuesday that because she carries a cancer-causing mutation, she has had a double mastectomy.
“She’s the biggest name of all, and I think given her prominence and her visibility not only as a famous person but also a beautiful actress, it’s going to carry a lot of weight for women,” said Barron H. Lerner, a medical historian and the author of “The Breast Cancer Wars.”
Breast cancer experts and advocates applauded the manner in which Ms. Jolie explored her options and made informed decisions, saying it might influence some women with strong family histories of breast cancer to get genetic tests.
But some doctors also expressed worry that her disclosure could be misinterpreted by other women, fueling the trend toward mastectomies that are not medically necessary for many early-stage breast cancers. In recent years, doctors have reported a virtual epidemic of preventive mastectomies among women who have cancer in one breast and decide to remove the healthy one as well, even though they do not have genetic mutations that increase their risk and their odds of a second breast cancer are very low.
Ms. Jolie wrote on the Op-Ed page of The New York Times that she had tested positive for a genetic mutation known as BRCA1, which left her with an exceedingly high risk for developing breast and ovarian cancer. Her mother died at 56 after nearly a decade with cancer, though Ms. Jolie did not specify which type. After genetic counseling, Ms. Jolie opted to have both breasts removed and to undergo reconstructive surgery.
Ms. Jolie, 37, who declined to be interviewed for this article, was treated at the Pink Lotus Breast Center in Beverly Hills, Calif., a clinic opened in 2009 by Dr. Kristi Funk, identified on its Web site as a former director of patient education at the breast center at Cedars-Sinai Medical Center in Los Angeles.
Her condition is rare. Mutations in BRCA1 and another gene called BRCA2 are estimated to cause only 5 percent to 10 percent of breast cancers and 10 percent to 15 percent of ovarian cancers among white women in the United States. The mutations are found in other racial and ethnic groups as well, but it is not known how common they are.
About 30 percent of women who are found to have BRCA mutations choose preventive mastectomies, said Dr. Kenneth Offit, chief of clinical genetics at Memorial Sloan-Kettering Cancer Center in New York. Those who have seen family members die young from the disease are most likely to opt for the surgery.
“It’s important to make it clear that a BRCA mutation is a special, high-risk situation,” said Dr. Monica Morrow, chief of the breast service at Sloan-Kettering. For women at very high risk, preventive mastectomy makes sense, but few women fall into that category, she said.
For women’s health advocates, the trend toward double mastectomies in women who do not have mutations is frustrating. Studies in the 1970s and 1980s proved that for many patients, lumpectomy was as safe as mastectomy, and the findings were seen as a victory for women.
Even so, there is increasing demand for mastectomy. Dr. Morrow says that she has often tried to talk patients out of it without success. Some imagine their risk of new or recurring cancer to be far higher than it really is. Others think that their breasts will match up better if both are removed and reconstructed.
Ms. Jolie’s decision highlights the painful dilemma facing women with BRCA mutations.
“She is a special case, and you can completely understand why she did it,” said Dr. Susan Love, the author of a best-seller, “Dr. Susan Love’s Breast Book,” and a breast surgeon. “But what I hope that people realize is that we really don’t have good prevention for breast cancer. When you have to cut off normal body parts to prevent a disease, that’s really pretty barbaric when you think about it.”
Parte 2: (artigo original aqui)
Women who carry BRCA mutations have, on average, about a 65 percent risk of eventually developing breast cancer, as opposed to a risk of about 12 percent for most women. For some mutation carriers, the risk may be higher; Ms. Jolie wrote that the estimate for her was 87 percent.
Because the BRCA mutations are rare and the test expensive — about $3,000 — it is not recommended for most women.
But for women with breast cancer who do have mutations, knowing their status can help them make further treatment decisions, like whether to have an unaffected breast or their ovaries removed.
Women who should consider testing are those who have breast cancer before age 50, a family history of both breast and ovarian cancer, or many close relatives with breast cancer, especially if it developed before age 50. Any woman with ovarian cancer should consider being tested, as should Ashkenazi Jewish women with breast or ovarian cancer. Men with breast cancer and their families should also ask about the possibility of a genetic predisposition to the disease.
Because the cancer risks for carriers are so high, women with the mutations are often advised to have their breasts and ovaries removed as a preventive measure. It is generally considered safe to wait long enough to have children before having the ovaries removed, but the operation should be done by age 40, said Dr. Susan M. Domchek, an expert on cancer genetics at the University of Pennsylvania and the executive director of its Basser Research Center, which specializes in BRCA mutations. There is no reliable way to screen for ovarian cancer, and most cases are detected at a relatively late stage, when the disease is harder to treat and more likely to be fatal.
Ms. Jolie said that she herself had a 50 percent risk of ovarian cancer. “I started with the breasts, as my risk of breast cancer is higher than my risk of ovarian cancer, and the surgery is more complex,” she wrote.
Removing the breasts is not the only option, Dr. Domchek said. Some women with BRCA mutations choose close monitoring with mammograms and M.R.I. scans once a year, staggered so that they have one scan or the other every six months. Those tests offer a chance to find cancer early.
For some women, certain drugs can lower the risk of breast cancer, but not as much as preventive mastectomy.
It is also possible for women who are mutation carriers to avoid passing the gene to their children, by undergoing in vitro fertilization and having embryos screened for BRCA genes. Then, only embryos free of mutations can be implanted.
Ms. Jolie’s celebrity and her roles as a mother of six and a movie star who plays strong women, including the swashbuckling archaeologist Lara Croft, may give her decision far-reaching impact.
Dr. Isabelle Bedrosian, a surgical oncologist at M. D. Anderson Cancer Center in Houston, has been a vocal critic of the trend toward double mastectomy among women who are not at high genetic risk. However, she hopes the decision by Ms. Jolie will focus women on the value of genetic counseling and making informed decisions.
“I think there is an important upside to the story, and that is that women will hopefully be more curious about their family history,” Dr. Bedrosian said. “We need to be careful that one message does not apply to all. Angelina’s situation is very unique. People should not be quick to say ‘I should do like she did,’ because you may not be like her.”
Mais blá-blá-blá: Angelina Jolie has double mastectomy due to cancer gene (BBC)