Angelina Jolie Reveals She Had Preventive Double Mastectomy

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May 14, 2013
My Medical Choice
By ANGELINA JOLIE

LOS ANGELES

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.
http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?_r=0

Whether one agrees or not with the medical decision Jolie made for herself, I think she has done something of great benefit to those women dealing with breast cancer, or those who will have to deal with it in the future, by going public with this revelation. At one time, the issue of breast cancer and mastectomies, was clouded in shame and secrecy and fear, and it was not something to be openly discussed or revealed. Betty Ford helped to change that, and I think Jolie's revelation will also help to make a similar impact, particularly given her status as one of the cinema's leading "sex symbols".

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I agree, this was an important thing.

I learned today that if you have that gene, most health insurance carriers will cover prophylactic surgery, as well as the reconstructive surgery.

When it comes right down to it, it's just a breast. Better to remove it and sleep well at night.

2 Replies

@firefly,

I had a friend who had a double mastectomy and told, essentially, no one at all, this now a long time ago. I can only imagine all that.

So - I'm quite fine with Angelina talking.

I guess I'll add - I had two bc surgeries and landed ok.

At the same time, while I get Jolie on this, I have iffy questions.

I read a year or two ago about a Chicago runner who proactively diced not only her breasts but her uterus, an m.d., I think.

That is almost culinary.

2 Replies

@chai2,

That's good that insurers will cover the surgery, but first you have to get tested.

Quote:

...The cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women...

I'd say that's an obstacle for MOST women. Sad

2 Replies

We are much more then our body and it's parts. I commend her for going public with this. I have seen some pretty juvenile and insensitive remarks about her having had this preventive procedure done. You know what it doesn't matter what anyone thinks when you put into perspective her children will never have to watch their Mother suffer as she battles for her life against breast cancer. Instead they will have a Mother in their lives and she won't be taken away from them.

1 Reply

@JeffreyEqualityNewma,

So very true.
I can be crabby about aspects of this.

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@ossobuco,

Quote:

I read a year or two ago about a Chicago runner who proactively diced not only her breasts but her uterus, an m.d., I think.

Angelina Jolie intimates in that article that she will likely address her increased risk of uterine cancer in the future, she just felt that removing the possibility of breast cancer should come first because it was a greater risk and more complex procedure.

I think to completely reduce the increased risk of uterine cancer, associated with BRAC1 and BRAC2, removal of the uterus and/or the ovaries is also necessary.

I was just listening to Congresswoman Debbie Wasserman Schultz discuss her two preventive mastectomies, and her preventive ovariectomy, which she had done after testing positive for carrying the BRAC2 gene, and after she had treatment for cancer in one of her breasts.

And an anchorwoman on another news show talked about her upcoming surgery for breast cancer.

I'm glad that Jolie's article is already provoking more open discussion of this issue. I really applaud her for going public in this way. Perhaps she can be influential in getting insurance coverage for the BRAC1 and BRAC2 genetic testing, certainly for those who believe they are in a high risk group based on their family histories of breast and uterine cancer.

Quote:

I had a friend who had a double mastectomy and told, essentially, no one at all, this now a long time ago..

That's the way it used to be. The whole subject of breast cancer and mastectomies was not talked about--it was hidden, like something shameful. Really, it was Betty Ford, who bravely went public with her own breast cancer and mastectomy, when she was First Lady, who helped to open the dialogue, and to raise awareness about breast cancer and take it out of the shadows. Think of how many lives she probably helped to save. Think of the emotional support she offered to all the women who had breast cancer and who underwent mastectomies. And Angelina Jolie is also doing that now with her revelation and her advocacy.

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I'm mixed on all this.

A friend of a friend was in stage 4 and underwent stem cell stuff and may be still ok, I don't follow, but it is many years later, last I read, good.

I simply don't know.

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@chai2,

Quote:

When it comes right down to it, it's just a breast. Better to remove it and sleep well at night.

Certainly.

But I think it's important to many, if not most, women to be able to have reconstructive breast surgery following a mastectomy. Many might not have a mastectomy, even if that were their best option, if reconstruction was not available.

So it's important that all women have health insurance that will cover reconstructive breast surgery if a mastectomy is necessary, or if it is done as a preventive measure.

2 Replies

@firefly,

I don't assume that, re reconstruction.

You may know more, re data.

1 Reply

@ossobuco,

I was probably mainly thinking about younger women, in terms of many wanting the option of reconstructive surgery, because there are differences in age when it comes to choosing that procedure. But it's mainly younger women who are undergoing the preventive mastectomies.

Quote:

Younger women like Angelina Jolie, who discover they are high-risk for breast cancer and elect to have their breasts removed before it develops, are driving the trend towards better breast reconstruction options for all women.

Immediate reconstruction procedures, in which breast reconstruction begins at the same time as the mastectomy, are now the "gold standard" for breast cancer patients, said Dr. Joshua Levine, chief of surgical services at the New York Center for the Advancement of Breast Reconstruction.

It allows breast surgeons and plastic surgeons to collaborate on both removing the cancer and reconstructing more natural-looking breasts, he said.

Still, the American Society of Plastic Surgeons estimates only 30 percent of women are made aware of reconstruction options before having a mastectomy.

"For the majority of women, immediate reconstruction is an option, and one that unfortunately women are not always told about," said Dr. Gary Arishta, reconstructive microsurgeon at the PRMA Center for Advanced Breast Reconstruction in San Antonio, Texas.
http://www.nydailynews.com/life-style/health/jolie-mastectomy-reflects-better-breast-reconstruction-options-article-1.1343689#ixzz2TKqxvI1R

Only a minority of all women--about 30% I think--actually have reconstructive breast surgery following mastectomies, and the percentages have been increasing over the years. But the data isn't all that clear. It's difficult to separate out patient preference from limited access to care. It's an area that requires more study. There are complex factors involved.

http://www.healio.com/orthotics-prosthetics/post-mastectomy/news/print/o-and-p-business-news/%7B464c8960-1e47-48eb-a7d2-e56f8dedeff7%7D/majority-of-post-mastectomy-patients-not-undergoing-reconstruction

http://abcnews.go.com/Health/story?id=118035&page=1#.UZMXASrD_3g

http://www.bradayusa.org/breast-reconstruction.html

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My skew is re limited access to care, at all.

Plus, I'm not all with it for many women, tested, lopping off their breasts.

I can see doing that, but I'm not enthusiastic for it as a remedy.

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i would have had more respect for Jolie if she had objected to not owning her bodies genes

Quote:

Because of Myriad’s patents, any American who wants to have his or her DNA tested for the potentially life-threatening BRCA mutations has to use the services of Myriad Genetics. There is no possibility of an independent test. Myriad charges about $3,000 for the testing, but hundreds of clinical laboratories nationwide could do it for less than $200.

Worse, the restrictions of Myriad’s patents are not limited to breast cancer genes. The company claims any piece of DNA having “at least 15 nucleotides” of the BRCA1 gene. In work we recently published in the journal Genome Medicine, we found that these short sequences in BRCA1 also appear in 689 other genes that have a wide variety of functions, including brain development and proper cardiac functioning.

Myriad’s claim is outrageous but must be understood in context. All of the genes in the human genome share 15 nucleotide sequences with numerous other genes. So the broad reach of a patent on a single gene is not unique to Myriad’s claims on BRCA1. If patents allow claims for 15 nucleotide sequences, then a patent that was issued for bovine improvement to Cargill, an agricultural company that provides advice on cattle breeding, covers 84 percent of human genes, even though Cargill is interested only in cows. This lack of specificity underscores why patents on short, indiscriminate DNA sequences never should have been issued.
.
.
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Because of Myriad’s patents, any American who wants to have his or her DNA tested for the potentially life-threatening BRCA mutations has to use the services of Myriad Genetics. There is no possibility of an independent test. Myriad charges about $3,000 for the testing, but hundreds of clinical laboratories nationwide could do it for less than $200.

Worse, the restrictions of Myriad’s patents are not limited to breast cancer genes. The company claims any piece of DNA having “at least 15 nucleotides” of the BRCA1 gene. In work we recently published in the journal Genome Medicine, we found that these short sequences in BRCA1 also appear in 689 other genes that have a wide variety of functions, including brain development and proper cardiac functioning.

Myriad’s claim is outrageous but must be understood in context. All of the genes in the human genome share 15 nucleotide sequences with numerous other genes. So the broad reach of a patent on a single gene is not unique to Myriad’s claims on BRCA1. If patents allow claims for 15 nucleotide sequences, then a patent that was issued for bovine improvement to Cargill, an agricultural company that provides advice on cattle breeding, covers 84 percent of human genes, even though Cargill is interested only in cows. This lack of specificity underscores why patents on short, indiscriminate DNA sequences never should have been issued.

http://www.washingtonpost.com/opinions/the-supreme-court-should-invalidate-the-patent-on-human-dna/2013/04/05/959fdcbc-9de1-11e2-a941-a19bce7af755_story.html

a poor showing for an alleged human rights crusader.

1 Reply

@Eva,

Eva wrote:

That's good that insurers will cover the surgery, but first you have to get tested.

Quote:
...The cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women...

I'd say that's an obstacle for MOST women.

Only those living in a country without Universal Health Care.

My wife died from breast cancer when she'd just turned 40. He father died at a similar age. My daughter will be tested in a few years time, and she'll probably have to make a similar decision.

Even though having your breasts removed is preferable to dying, it's not an easy decision to make by any means, even when it's cancerous, let alone just a probability.

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@firefly,

I have a friend that is awaiting results of the DNA test to decide whether to take her other breast. the first on will have to come off regardless.

it's a very traumatic decision...

1 Reply

@Eva,

Eva wrote:

That's good that insurers will cover the surgery, but first you have to get tested.

Quote:
...The cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women...

I'd say that's an obstacle for MOST women.

Good point Eva.
I just looked this up on the Susan G. Komen website....

Genetic testing costs

Check with your health insurance provider to find out whether the costs of genetic counseling and testing are covered in your plan. Many plans cover these costs when your health care provider recommends this testing. If you have a new insurance plan that began on or after August 1, 2012, the Affordable Care Act (health care reform) requires coverage of these costs (when recommended by a provider). If you have a BRCA1 or BRCA2 gene mutation, the Affordable Care Act also requires coverage of counseling to help you decide if taking medications to lower the risk of breast cancer is right for you.

So, while not perfect, it's getting better.

The same site states that the original person getting breast or ovarian cancer should consider getting tested for the genes, as a baseline for others females in her line.

Here's the link to the Susan G. Komen site for more information.

http://ww5.komen.org/BreastCancer/GeneMutationsampGeneticTesting.html

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@ossobuco,

ossobuco wrote:

I read a year or two ago about a Chicago runner who proactively diced not only her breasts but her uterus, an m.d., I think.

That is almost culinary.

Well, I guess that's a case of "my body, my right" regardless of what you, I or anyone else thinks.

1 Reply

@firefly,

firefly wrote:

Quote:
When it comes right down to it, it's just a breast. Better to remove it and sleep well at night.

Certainly.

But I think it's important to many, if not most, women to be able to have reconstructive breast surgery following a mastectomy. Many might not have a mastectomy, even if that were their best option, if reconstruction was not available.

So it's important that all women have health insurance that will cover reconstructive breast surgery if a mastectomy is necessary, or if it is done as a preventive measure.

I heard on NPR (where I first heard this story about Jolie) that if your insurance covers the mastectomy, they also cover the reconstructive surgery.

0 Replies

@Rockhead,

Rockhead wrote:

I have a friend that is awaiting results of the DNA test to decide whether to take her other breast. the first on will have to come off regardless.

it's a very traumatic decision...

Let us know how this comes out rocky.

Yeah, it's individual for each person of course, re their feelings. I really have to wonder how much is based on what the particular society a person lives in has pushed as to the importance of their breasts. i.e. Why are breasts important? Because they feed babies.

Speaking for myself, my breasts are not me. They are 2 parts of my body that exist to serve a particular purpose. I think for a lot of women, and people in general are more and more disconnected from that. At the same time, more and more information is out there that can help save someone's life.

As your friend probably realized Rocky, much more information was available for her to make choices and decisions that she ever conceived existed.

I think for a famous name everyone knows person like Jolie, who's generally acknowledged to be beautiful, both in face and body to bring this out to the public can be considered a watershed moment.

Companies like Victoria's Secret let's say, literally (no pun intended) push breasts in our face using albeit attractive, but airbrushed models. In real life, none of those models breasts are different than any other womans. We confuse the fact we're not buying breasts, we're buying a bra, a piece of cloth is all, that has been skillfully marketed to convince a woman it will make a part of their anatomy into something else. Something not exactly part of being a woman...like it's an accessory.

Here's a woman we all know that's saying (my words) "It's just your breast. Yes it's a decision, but one we all as women need to be able to make if necessary."

It's interesting to think that some women wouldn't give as much anguish to the thought of removing their big toe, which is Much more important to the functioning of their body, than to what is really just a big sweat gland on your chest.

1 Reply

heh, sitting here thinking over my first cuppa...

If I were told today my breast was diseased, I'd immediately say in horror "Get it off me before it kills me! I'll worry about all this emotional stuff later, because there will be a later. Take it off now."

I like to get my priorities straight. First - get rid of the body part that could kill me. Second - worry about how I'm going to "feel" about it.

I think I'd feel like I was pretty glad it wasn't going to be the cause of my death.

1 Reply

Angelina Jolie Reveals She Had Preventive Double Mastectomy

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