Tuesday, May 14th, 2013


Angelina Jolie @ Golden Globes 2012

Angelina Jolie wrote an op-ed for the New Yor Times today about her decision to have double mastectomy. Jolie wrote, “For any woman reading this, I hope it helps you to know you have options.” Jolie carries the mutated BRCA1 gene, which dramatically increased her risk of developing breast cancer and ovarian cancer. By opting for a double mastectomy, Jolie said she has reduced her risk from 87% to under 5% for breast cancer. She noted how vital support from family, especially partners, can be during the process.

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.

Of what she said, I felt like this was most inspiring:

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 hopes by sharing her story that she will raise awareness and encourage women to get gene tested to see if they may be “living under the shadow of cancer.” She says, “Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.”  She will continue to share more about her journey going forward, which will be posted on the Pink Lotus Breast Center’s website.

Many of us have been affected by breast cancer, whether directly or because someone we love has been diagnosed.  Jolie’s story, and those like hers, and the stories readers have shared here in the past, help us come together to understand, raise awareness, and move forward in the fight against cancer.  It’s an opportunity to have a difficult discussion, to learn more about risk factors and family histories, to talk to survivors and learn from their journeys.  It doesn’t have to be October and dressed in pink for reminders of why it is important to know our bodies, family histories, and what things we can do to prevent and/or reduce our risks.

If you have a story to share, know it will be welcomed, and your courage and strength of sharing is truly inspiring.

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63 thoughts on “Angelina Jolie Shares Her Story: “My Medical Choice”

  1. Disa

    What courage!
    Thank you, Christine, for posting a link to the NYT op-ed.

  2. Avatar of Megan Megan

    This story broke at a particularly poignant time for me, as my mum is having surgery next week to remove a lump in her breast. Doctors are unsure of the diagnosis but our family history is against us. There has been talk of her being offered a double mastectomy and I think it’s something both she and I would strongly consider if offered.
    I admire Angelina for going through this privately and not making a media circus of it. Her open letter is touching and inspiring, and I think she’s handled it with such dignity. I really do hope it raises awareness and encourages women (and men!) to check themselves and find out about their family histories.

  3. Avatar of Kristina kmk05 (Kris)

    My aunt went through a lumpectomy, and then a double mastectomy (with implants, because they are immediately put in in France). Then she went through chemo for more than a year and when she finally was in the clear and had gotten inches of her hair back the scandal in France erupted over the PIP implants and she had to get her implants replaced.

    I don’t even know how we got through it: there was so much denial in her case, because she didn’t want to lose her breasts. Society conditions us to think it’s the worst that can happen, and that’s dramatic. Because with the diagnosis comes so much worse. It was the diagnosis, and then the loss of her breasts, and then the chemo and the loss of her hair everywhere (head, eyebrows), and the permanent stent thingie put in in her arm so they could deliver the drugs every few days for more than a year, the fact that she couldn’t lift anything, the continuous yeast and GI infections (because chemo plays with the bacterial flora) and so much more. We were just so scared all the damn time.

    We have a history of cancer in the family, and I am strongly considering getting tested.

    I am just so happy Angelina Jolie has written about it and highlighted the decision we CAN make, no matter what people around us say about ‘natural bodies’, and ‘but you don’t have the disease’! I have seen the disease, and I don’t want to have to fight it.

    • How is your aunt doing now, Kris? Sounds like she has gone through a lot, and I hope she’s doing better now that (hopefully) the worst is over and she’s had her implants replaced. I appreciate you sharing – it is so inspiring to hear about your aunt and how your family has been there for her throughout. We absolutely need to be there for each other to support those difficult decisions when it’s time to make them.

      Thank you for sharing!

      • Avatar of Kristina kmk05 (Kris)

        Thank you so much for your comment Christine! My aunt has now been in the clear for almost 2 years, but you really have to wait to the five year mark (that’s how cancer survival rates are calculated, if I’m not mistaken).

        The PIP replacement was really the tipping point from scared to very angry for me: after all she (and other breast cancer survivors) went through, she had to go under the knife AGAIN because of a greedy company (whose CEO and board are all men). At least France replaced the implants for free.

        Angelina Jolie’s story hit very close to home, because this is such a devastating and yet preventable disease. I feel there is just not enough awareness of what we should do, as women, in terms of knowing the signs and the options available to us. Everyone knows what the pink ribbon stands for, and yet, apart from ‘lump’, there isn’t much I know to look out for in terms of prevention.

        • It’s been really amazing to hear from readers about this today, too. There is a lot of support out there for whatever treatments and routes people choose, and knowing that it’s OK to talk about them, and you can find support for making decisions about your health is really helpful during the journey.

  4. Thank you for sharing this story! Her bravery and selflessness continue to amaze me. What an extraordinary woman!

  5. Avatar of hazel Hazel

    I am very touched by her story and her concern for her children’s future. This was certainly handled in a very discrete manner by healthcare professionals and medical facilites and she could have never had this come to light if she hadn’t wanted it to.

    I think it was courageous of her to disclose it.

  6. Avatar of Christina Christina J.

    I think it is wonderful of her to share her story as it is very inspiring. I do not know if it is realistic for “normal” people to be able to afford gene testing. I don’t think my insurance would cover that. Not to mention that millions of women in America don’t even have medical inurance. I also don’t think that insurance would pay for breast implants after a masectomy. It is still a very inspiring story :)

    • Jolie did mention this: “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.”

      • Elaine

        OH my lord seriously? I cannot believe it costs that much :( In Canada you can get the testing for free but only if you are high risk (multiple family members who have had BC before menopause), and your masectomy and implants are also free. If you are not high risk you have to pay for the testing out of pocket, but your masectomy and implants will still be free if your testing reveals gene mutations

    • Kat

      I do know a “normal” woman who underwent gene testing (she had the gene and also had a double mastectomy) as well as a “normal” woman who had a double mastectomy and reconstruction. It all depends on what your insurance coverage will pay for. I would like to see the day when all women can access these options.

      Best wishes to Angelina and everyone else who is affected by breast cancer.

    • Susan

      I guess it depends on your insurance, but I believe most companies pay for reconstruction after mastectomies.I am sorry to say I have four friends fight this battle, one also had the BRAC mutation and opted for the double mastectomy. As someone who is adopted and has no access to a family medical history, I am torn about testing. Every time i go for a mamogram I hold my breath.

      My sister in-law works for a hospital system and runs their breast cancer awareness programs which are funded in large part by grants from Komen and Avon. These programs offer low income women and those without insurance the opportunity to get a regular mamo. I would urge anyone without insurance to check with their local hospital system to see if they also have such a program.

      • I’m also adopted and have felt torn about testing in the past. My mom thinks I should get tested, but I think it’s not a good indicator of risk unless you have your bio-medical history.

        Here’s my argument against it (for myself at least): I don’t know any of my biological family or their medical history. The only preventative measure that one can really do if she’s positive for a mutated BRCA1 gene is a prophylactic mastectomy. If I were to test positive for a mutated BRCA1 gene, I wouldn’t have the full picture because I wouldn’t know how many biological relatives have had breast cancer. Since I wouldn’t have a full picture of my risk factor, it wouldn’t make sense for me to get a prophylactic mastectomy. When I reach 40 (the age at which you are supposed to start having regular mammograms), I’m going to be vigilant and get tests done every year.

        Again, this is just what I’ve decided for myself as an adopted woman who doesn’t know anything about her biological makeup.

        • Avatar of Sandy Sandy

          I’m not saying you shouldn’t have the right to make whatever decision you see fit, Alexis, but I feel like I should tell you that if you have the 8 bp deletion in BRCA1, you have an 87% chance of developing breast cancer and a 40% chance of developing ovarian cancer. Period. It doesn’t matter if your mom had cancer or didn’t, if you eat organic wheat grass every day, or if you were raised on Neptune. These relatives who have had cancer are sort of the alert bells for many women to get tested, but the test itself stands alone. Have you thought about seeking genetic counseling services? It might help you make an informed decision about things like this.

          • Of course I have thought about genetic counseling.

            So, let’s say I take the test and find out I have an 87% chance of developing breast cancer, then what do I do?

            This was the point I was making: The only thing one can do in situations like this is to have a prophylactic mastectomy. Are there other options (other than vigilant screening) that I’m not aware of? I’m a young woman (28 years old) who has not had children yet. I don’t think having a mastectomy, hysterectomy, and/or oophorectomy is something that any MD would suggest to someone in a similar situation to me.

    • Avatar of Veronica Veronica

      As of 1998, most health insurance plans are required by law to cover reconstructive surgery for female breast cancer survivors. There are only a few plans that are exempt, and of course, a woman may elect not to undergo the surgery, but for the most part, the few women I’ve known who have had mastectomies have all been covered.

  7. Avatar of Amy xamyx

    While I think it’s great Angelina Jolie is spreading awareness, these tests just aren’t accessible to most American women, nor is the option for a preventative double-mastectomy. The test alone is $3000.00, then there’s the cost of the surgery, the cost of recovery, etc. The CDC doesn’t even recommend mammograms for women under 50, which means even with insurance, those under the age of 50 likely won’t be covered. As mammograms are far less expensive, these genetic tests won’t be covered, and mastectomies won’t either, unless cancer has been detected. Perhaps she could lend her voice to the crusade for these things to be more accessible to the average woman; otherwise, this is doing nothing more than causing more stress & paranoia.

    • In the article, Jolie specifically mentioned the work needed to make the tests more accessible and affordable to all people:

      “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.”

      • Avatar of Amy xamyx

        I realize she made that statement, but what I’m referring to is an actual “crusade”, similar to the type she does around the globe for other issues. This is happening in her own backyard, so to speak, and a simple statement in an op-ed article isn’t sufficient. She has the power of her celebrity to make her voice heard, and it would be nice to see her use it, and make an actual difference in the same way she has for her other causes.

        • I read her statement, and her article in a very different light (I did not leave thinking that she would do nothing, since she mentioned additional info coming in the future about what she did), but that is my opinion – only the future will show what she does or does not do.

        • Kat

          Why not give her the chance to recover? She only had the surgery a few months ago, and from what I understand, surgeries to address her risk of ovarian cancer are in her future.

        • Mari

          I am not an American, but the power of change not only lies on Jolie. People interested and/ or affected should be writing to their representatives.
          Tnx, Christine for sharing this story. I read that both her mother and maternal grandmother died of either breast cancer or ovarian cancer at young ages. She did this for the possibility of see her children grow, and she shared it because a test made possible for her to be informed.

        • While I agree that Jolie has power to make her voice heard, she shouldn’t feel she *has* to lead a crusade for breast cancer testing just because of what she chose. She is a woman who had a risk of breast cancer and took steps to mitigate that risk. She is not the “Face of Breast Cancer Testing” and if she chooses to spend her energy on her family and her own care first, that’s a choice we should respect. She may feel too personally about this cause to want to advocate for it…or she may take this up as her newest cause and go full steam ahead, I don’t know. I just get a little twitchy when people say celebrities ‘should’ do something just because something has happened to them. We wouldn’t do that with regular people…my mother has cancer, and no one’s suggested she become a spokesperson or advocate for other people with her type of cancer, and she’s too busy trying to handle her own health care and treatment to do anything of the sort.

          • Avatar of Amy xamyx

            I’m not saying Ms. Jolie should or shouldn’t lead a crusade for change, nor is she obligated to; there have been other celebrities that have chosen to go this route, but have done it privately. Ms. Jolie has also openly supported, financially and otherwise, an administration which wants to create “panels” who will decide what tests, treatments, preventive measures, etc. will be covered by insurance. It just comes off as a bit hypocritical to me.

    • Avatar of Sandy Sandy

      The story of the BRCA1 and BRCA2 are sad ones for the genetics community. The woman who started looking for breast cancer genes did so because it had affected her family. She was able to identify the region of the chromosome, and then published a paper on it. A private company (with more $ to dump into it) read her article and used the data to beat her to finding the mutations . . . then patented the gene so that they are the only ones who can test for it and they can charge as much as they want. Even when we sequence DNA for other things, we aren’t “allowed” to sequence through these genes. Christine knows more about the legal end than I do, but it’s not the actual science that’s expensive or prohibitive– it’s greed.

    • Avatar of Ivanna Ivanna

      I think the fact that everyone, and I mean, EVERYONE read Jolie’s article, actually did more for genetic counseling and awareness than anything I’ve ever seen attempted before. EVERYONE is now talking about the availability of this test to all women. I don’t understand people’s anger with her. All eyes are on her, and she is inspiring all women and fighting for them. She never had to tell the world about something so personal, but through her courage, every woman who’s read it has now considered her options. The end.

  8. Avatar of Dinitchka Dinitchka

    I am a BRCA gene ‘carrier’ (Ashkenazi) and I go for regular check-ups. I will NOT have my body cut up on because I carry a specific cancer causing gene. I don’t know AJ’s entire story but I think that many women are getting this surgery without thinking about the big picture. They have their breasts cut off and their innards removed for a gene they carry? Just because you are a carrier it does not mean you WILL get cancer. You just have a higher potential. I’m glad she is open about it and happy about her decision. It’s just something I feel that would not be a benefit for me.

    • Avatar of Alexis Alexis Gordon

      You’re definitely correct, however, Jolie had an 87% chance of getting breast cancer. Also, her mother passed away at a young age (56) from breast cancer. In her case, I think she would have been remiss to not take preventative steps.

      • Mari

        I just read that her maternal grandmother passed away at 45, probably cancer too. She said that the women on her maternal side tended to die young.

    • Are Ashkenazi Jews at higher risk for the gene? I’m also Ashkenazi background but only one relative in my family has had breast cancer so I didn’t think I was higher risk.

      • Avatar of Alexis Alexis Gordon

        Yes, there’s a founder effect among Ashkenazi Jews for a mutation in the BRCA1 gene. I would say though, that because only one of your blood relatives had breast cancer you aren’t necessarily high risk. Just because a certain ethnicity has a higher risk for a certain disease, it doesn’t mean that if you belong to that ethnicity you also have a higher risk. If you go to the wikipedia page for the BRCA1 gene, you can see a list of over 20 ethnicities that also have a founder effect for a mutation in the BRCA1 gene, but that doesn’t mean that if you belong to one of those ethnicities you will automatically have a higher risk of breast cancer.

        • Avatar of Sandy Sandy

          Alexis, I know you mean well, but you are NOT a medical professional or a scientist and some of the information you are doling out is not accurate. I encourage everyone who has doubts and questions to speak to the appropriate professionals. Wikipedia, Temptalia, and newspapers are not appropriate forums for medical advice.

          • I don’t believe that I gave the impression that I was a medical professional. I’m sorry if it came across that way. What information was I giving out that was not correct? I didn’t say anything definitive, just that being in a certain ethnicity that has a higher risk for a disease doesn’t necessitate that an individual belonging to that ethnicity will have that disease. Also, everyone knows that you should speak to a specialist MD for specific medical advice, not just get it on a web forum.

    • Avatar of Sandy Sandy

      I think you’re being extremely rude and out of line by suggesting that these women and their doctors don’t consider these surgeries with the utmost care. You need to be more respectful of their decisions and not write as if you’re a geneticist or a scientist with a real basis for critiquing their choices.

    • Avatar of Sandy Sandy

      ANYONE who has this BRCA1 mutation has an 87% chance of developing breast cancer and a 40% chance of developing ovarian cancer- no matter how many or few relatives have had it, no matter how healthful their diet is, no matter how much their exercise. It is also important to note that many times in young women, the breast tissue is so dense that a mammogram will not detect cancerous changes.

  9. Avatar of Alexis Alexis Gordon

    Quick correction: Everyone carries the BRCA1 gene. The genes help repair damaged DNA. What Jolie has is a mutated BRCA1 gene, which raised her chance of breast cancer.

  10. Stacey

    Did you think about her passing her genes to her two biological daughters? So are they also going to go thru this medical procedure when they get older? Am not trying to put a damper on all this,but I do consider all possibilities.

    • Avatar of Amy xamyx

      She may not have known the specifics about the gene, the testing, etc. This test is fairly new, and may not have even been discovered at the time her eldest was conceived, and I’m not sure about the younger one. Also, there hasn’t been much in the way of promoting these tests, and a few years back, there was some controversy about the efficacy & necessity, so her doctors may not have even mentioned it to her.

    • Kat

      Her daughters, should they carry the gene, will have the same options available to them as adults, and hopefully will benefit from advances in medical science.

    • Everyone who has children passes on “bad” and “good” genes. All of us are essentially ticking timebombs – some of us have an idea of what kind of “bomb” it might be and some of us do not know what we are genetically pre-disposed to develop. Some people take action to try to counteract the genetic predisposition – which is what she has done.

  11. Mimi

    If Jolie chooses to, she can have her biological daughters tested to see if they carry the same mutation on the BRCA1 gene. Both my cousin and I had breast cancer in ’05. Our aunt died of ovarian (these two cancers are linked). I was tested and was negative. My cousin got breast cancer again this year and had the gene test. She is positive for a mutation on the BRCA2 gene. Her daughter, son and brother should all be tested to see if they carry the same mutation. Men can get breast cancer and can pass it on to their children of either gender.

    • Avatar of Susan Susan Nevling

      Mimi, Thank you for mentioning that men get breast cancer too. This is seldom discussed.
      Sue

  12. Avatar of Michelle MichelleChefNYC

    I think this was a bold and courageous choice that she made for her future. It must be so hard to decide to remove a part of yourself, but it also must feel empowering to know you are taking control over your health and minimizing the impact it can have on your life and the lives of your friends and family. It must have been particularly poignant since she lost her mother to ovarian cancer after a long battle, and when her mother was still so young. I also appreciate that she handled this privately with dignity and respect, but also shared her experience which might help other women struggling with this choice. I wish her the best of luck.

  13. Avatar of Susan Susan Nevling

    Thank you for posting this and strongly indicating your support. My mother had breast cancer twice- 2 different cell types and had 2 mastectomies. She was lucky in that they were not rapid growers and not genetic. I knew a woman, many years ago, the mother of our best man who was ashamed of having a lesion on her breast and died due to the delay in treatment. We need to discuss this openly and often.
    Again, Thank you.

    • I’m so glad your mom was lucky and is doing well, Susan! It is so sad to hear about someone who was too ashamed to seek treatment. I hope that going forward that situation doesn’t get repeated!

  14. Thank you for sharing and supporting Angelina Jolie’s decision. This comes at an esspecially hard time for me. My grandmother was diagnosed with breast cancer and her lumpectomy for the malignant tumor is scheduled for next week; she begins radiation after that. I’m very worried about her as she has just made it through colon cancer this past summer. Though she does not carry this BRCA1 Gene mutation, the theme of breast cancer has been a strong one. I’m not even out of high school yet but over spring break my doctor found a lump in my breast and on April 24th I had surgery to remove a fortunately benign breast tumor. It was a frightening experience for me because I never in a million years expected something like that to happen to me so early on. In my opinion, if anyone feels a lump in their breast or has a family history like Angelina’s they should get tested as soon as possible for a tumor or this gene mutation.

    • Thank you for bravely coming and sharing your story, Marina! My thoughts and well wishes are with your grandmother as she moves forward in handling her breast cancer diagnosis. I am happy to hear that the lump you found was benign – but I can imagine how scary that experience was!

  15. zainab

    I think she was very brave to disclose this, and I really hope that this will encourage women to be tested, and view mastectomy as a treatment, not a disaster. My mother had to have a double mastectomy a month ago, and is currently undergoing chemotherapy, so this sort of message really hits home for me.

  16. Avatar of Melissa MelissaF

    BRCA testing was covered by my insurance after my cancer diagnosis at age 38, based on my age and family history. Please talk to your doctor if you feel you are at risk – usually it takes more than one relative with breast or ovarian cancer before they would consider you at risk enough to pay for it. My cancer surgeon checked on it for me.

    – If you have had breast cancer, any reconstruction is covered. This is mandated by federal and state laws. Preventive mastectomy is not covered by federal law. Some state laws do. Check with your insurance company and your doctor.

    – I made different choices (to do reconstruction etc.) than I would have thought I would going into this. I made three choices that have increased my risk (Nipple sparing surgery, lower tamoxifen dose/going off of it, implant), I wouldn’t criticize anyone elses choices – it’s not like there is an “easy” choice here. There is a bad and a worse choice. Which one is the bad and which one the worst is up to the individual.

    • Thank you for sharing, Melissa! That’s some great info and advice you’ve given.

      I agree – nobody should be criticized or judged for the decisions they’ve made related to their bodies and diagnosis – I can’t imagine anyone making decisions uninformed (just given the litigious nature of our society first of all!), let alone lightly.

  17. We have all been touched by breast cancer in some form or other and in some cases lost people to the disease that we loved at great deal. One of my university pals, a dear friend, is undergoing chemo treatment following her surgery right now and the group of us are sharing her experience over weekly updates and emails.

    Frankly, I read this announcement and have so many conflicting emotions regarding Angelina Jolie’s statement. I’m afraid this statement may cause women carrying the BRCA1 gene to possibly feel it is their moral obligation to undergo double mastectomy as some form of insurance. What about the 23% possibility she may never develop breast cancer at all. Granted, her odds are not favourable, but there are no guarantees in life, no certainties, and one could also get hit by a Mack truck or tragically develop some other form of cancer. What about the financial implications, the health insurance implications. Unrelated, but somewhat on point, I watched my grandmother who had a great number of health problems die of undiagnosed heart issues following routine cataracts surgery in her early 60’s. We do not know what life is going to throw at us. I do not intend to rudely dismiss Angelina’s very personal decision, but feel it should be left as that, not as what I imagine will turn out to be some publicly made crusade. I am also not saying I wouldn’t consider exactly the same thing were I to be in her position. But, is there anything left that is not made into a ’cause’?? We all have to live with our individual challenges and the decisions we make as a result. When we are ill and face those challenges, we are not being brave. We are merely doing what we can to mitigate our circumstances, because we want to keep living! I resent celebrities decisions becoming some form of compass for the rest or the aggrandizing of a single person’s decision.. that’s essentially my point.

    • Elaine

      The percentage 13%, not 23%.

      • Thanks for the correction, Elaine.. :) I’m not the sharpest pencil first thing in the morning. The math does not change my stated opinion. I still believe this is a highly personal decision and do not believe it is the correct answer for everyone. In that respect alone, I hope AJ’s decision does not encourage prophylactic removal of breasts and uterus as a form of preventative medicine. Of course, I am sympathetic to her situation and respect her power to decide what is right for her. I get a bit jumpy when it comes to treatments and treatment protocol. I’ve been exposed to them with my own health issues. I think women need to decide for themselves without outside/financial pressures.

  18. I think her decision of sharing her story is fantastic. It’s both informative and empowering. I do appreciate that she did not forget to acknowledge the cost of it all while still explaining her options, and that she added how this did not affect her femininity at all. It’s especially important as so much emphasis is laid on women’s breasts in an objectifying manner, as if all our worth lay there, and as so many awareness campaigns on breast cancer go on like ‘save the boobies LOL’, completely dismissing the fact that actual persons are, you know, attached to them.
    I already liked her, but I’ve gained a lot more respect for her.

    • You just summed up my disgust for the “Save the tatas” campaign. SCREW the boobs, save the WOMAN attached to them.

  19. Seattle

    This woman is incredibly beautiful, intelligent and inspiring.

    • Seattle

      -Also one of the few celebrities who uses her stardom for a good cause and raising awareness on important matters.