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Angelina Jolie’s Prophylactic Bilateral Mastectomy – If She & I Could Chat

Lots of people (too many?) seem eager to chime in about Angelina Jolie’s revelation regarding her recent decision to undergo a prophylactic bilateral mastectomy. Can you stand to read one more thing? I hope so.

Isn’t it amazing the buzz this story has generated? Even more amazing is the fact so many are judging her decision. 

I’ve been reading a few posts and articles with some rather negative comments about Ms. Jolie’s decision. Reading them made me wonder how many of those commenters have witnessed a loved one dying from cancer. It made me wonder how many of those commenters are BRCA+.

I have and I am.

My friend Jackie who blogs at From Zero to Mastectomy had this to say to those judgmental types, “Shut. The. F***. Up.”

You tell ’em, Jackie.

Of course as a celebrity icon, Ms. Jolie opened herself up to criticism as well as praise when she decided to go public, but only to a point.

Our society is obsessed with celebrities. Our society is obsessed with breasts. And in a sense, our society is obsessed with breast cancer. Put all these obsessions together and well… the unstoppable media frenzy is set in motion until the next big story pops.

I completely support Ms. Jolie’s difficult and very personal decision. I commend her for speaking out about it. Like me (wow, I never thought I’d be able to say Angelina Jolie and I have something in common), she carries a BRCA gene mutation, though not the same one as mine. I’m BRCA2 positive, she’s BRCA1.

Ms. Jolie is an advocate and humanitarian in her own right, so it’s not so surprising to me she decided to go public. She’s never been afraid to do things her way which, of course, is easier when you’re rich, beautiful and famous.

Still, she’s just a woman; one with a known hereditary risk factor. She’s a mother. She’s a wife. She’s a daughter who has witnessed her mother dying from cancer. I know what that’s like. So do too many others. Witnessing such a thing changes you. Finding out you are BRCA positive does too.

Overall, I felt Ms. Jolie’s New York Times piece was well written and certainly from her heart.

Was it perfect? Of course not, but what article is?

I was a bit concerned that some women, especially those who do carry a similar mutation, might feel pressured to make the same choice. There are other options.

But in the end, I have confidence that most BRCA+ women will choose wisely.

Women do not need others telling them what to do or not do with their bodies. 

I did feel Ms. Jolie seemed to sweep away the ovarian cancer risk a bit too briskly in her article, possibly giving a wrong impression regarding this serious potential risk. From my experience, the organs down under are often recommended to be the “best first things to go.” But she is young and maybe even planning more children, so this might be why other prophylactic procedures are on the back burner for now.

The bottom line is Ms. Jolie and her doctors made the best decisions for her.

The thing that bothered me most about her article was that the surgery itself was made to sound a bit too easy. In her article Ms. Jolie stated she was back to work within days after her surgery. Most of us live in the real world and getting back to work in a few days after such surgery is a stretch.

Still, it was a gutsy piece and a gusty announcement. Kudos to Angelina.

It’s worth stating that it’s important to remember ordinary women face these dilemmas and decisions every day. Their stories matter too.

As Marie, friend and fellow blogger at Journeying Beyond Breast Cancer, so eloquently stated:

“While I am glad that Jolie’s piece has raised awareness and stimulated discussion, it is also important that we balance the discussion with facts and also heed the stories of the ordinary women who have been sharing their experiences online for much longer. The celebrity factor has raised the discussion to the consciousness of the Twitter-sphere today, but the fleeting nature of celebrity news means something else will take its place tomorrow. Meanwhile, for thousands of women and men across the world who have been affected by cancer, the issues will continue to be debated and discussed every day. Don’t forget their stories too!”

Well said, Marie.

Ultimately, Ms. Jolie’s story is just that, her story. She is not responsible for decisions others do or do not make.

We are all responsible for our own decisions  and actions regarding our medical care; but at the same time, we all need and deserve access to quality information, guidance and care in order to be responsible. Disparity is still a problem for many. Not everyone has access to the quality of care Ms. Jolie had and will continue to have.

Does this disparity bother you? It bothers me.

If I had a chance to chat with Ms. Jolie now that we are both members of this BRCA+ sisterhood, I would ask her to please keep on speaking out on behalf of all those other women who do not have adequate insurance, or any insurance at all with which to cover the cost of genetic testing, genetic counseling and medical procedures they might choose to take following such testing. I cannot forget about them. I hope she can’t either.

I would ask her to use her celebrity status to speak out about the issue of gene patenting and why it matters to all of us. I would ask her to contemplate carefully what breast/ovarian cancer charitable organization(s) she might choose to partner with. I would ask her to be wary of pink ribbons and all that they are ‘tied up” with.

Most importantly, I would say I’m sorry you lost your mother to ovarian cancer. I’m sorry your children will miss knowing their grandmother. I understand why you made the decision you made. I support you and appreciate that you are reaching out and trying to make a difference.

I would say thank you for sharing; it matters that you did.

It always does.

Do you have thoughts or opinions about this story to share?

Do you believe prophylactic surgeries are too extreme? 

If you were faced with such a decision, what might you do?

 

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54 thoughts on “Angelina Jolie’s Prophylactic Bilateral Mastectomy – If She & I Could Chat

  1. Hi Nancy
    One thing that was brought home to me is that many people don’t understand that hereditary ovarian and breast cancer can be linked to the same BRCA mutation. I noticed some comments to the effect of “Well her mom died from ovarian cancer, so why she is having an mx?” (Jolie will also be having an oopherectomy.)

    I also saw a lot of “Stage Rage” which I find counterproductive: i.e., someone who does have cancer is saying “I have it worse, I ‘really’ have cancer,” as well as some comments that tended to dismiss a fairly complex operations (often a series of operations)

    Kind of a spitting contest…it all sucks

    FYI PBS has free viewing of “In the Family”

    http://www.pbs.org/pov/inthefamily/full.php#.UZTo08rPw9E

    Thanks to the surge of interest in BRCA after Angelina Jolie’s announcement that she carries the gene mutation and has had preventative surgery, we will now extend the free streaming of the film at POV for another 2 weeks until May 26th! Please spread the word! A new blog post from Joanna – who has been recovering from her own surgery – will be coming soon.
    http://inthefamily.kartemquin.com/

    1. Katherine, I thought of that same thing. And yes, that “stage rage” you speak of helps no one. Thanks for commenting and for sharing the links.

  2. I couldn’t wait to read your post on this. I thought it was great she shared her decision and experience with the public. It has certainly made it easier to talk about the topic, and it has also brought more attention to the gene patenting issue. A person can only address so many things in a single editorial, so I can see why she did not go into certain topics directly.

    1. Lindsay, You make a great point. You can’t try to say everything in one article. I need to remember that myself! Thanks for reading and commenting. I do hope she uses her celebrity status for raising awareness about the other stuff too. I think she might…

      1. I’m glad Angelina was open about there decision, using her celebrity status to bring attention to breast cancer and its prevention. It’s created a nationwide discussion, and we need to bring (breast) cancer detection and prevention to the forefront.

  3. I don’t have the Gene. I know women who are and have taken the same steps as a preventative. What bothers me more are some of the atrocious comments being levied as if her stardom was behind her choice. Those of us who have Breast Cancer know of the difficulties that result because of surgery side effects never mind those hideous drains off our chests with the chance of the drains coming undone spilling this putrid crap over us. that aside. Why do women have this propensity in attacking someone who did what she felt she had no other option? Some of the disturbing comments , She did it as a publicity stunt, she wanted a boob job, Brad Pitt was leaving her she needed to take desperate measures. I read one from a man saying he could get Lung Cancer and he’s not yanking out his lungs!! On some of our news shows they have been talking about it asking women if they are aware of it If it brings ONE woman to see her doctor she will have succeeded Every blog is covering and talking about it and that keeps the line of communication open and gives power to women to seek help they may have otherwise not have….

    Love Alli……

    1. Alli, There has been a lot of buzz hasn’t there? Most of it is good, but certainly not all of it. I’m not going to read any more of those negative articles if I can stand it. I even commented on one last night. Just couldn’t help myself! There’s too much judging going on about a lot of things, so it’s not really surprising so many feel they have the right to judge about PBM decisions too. Thanks for commenting.

      1. beautythroughthebeast, I commend her too. She started a lot of discussion by choosing to use her celebrity status to try to help educate and encourage others. Although I must admit, I am a bit weary of that phrase, “the Angelina effect.” Thank you for sharing.

  4. You said everything that needed to be said SO well — I cannot commend you enough for how well this entry was put together and expressed. Thank YOU! I’m so glad you’re here 🙂

  5. In the end, Angelina’s story is really just her story. I think she chose to highlight or downplay whatever was relevant in that moment (like you said, maybe she wants more kids, or maybe it’s too emotionally overwhelming?), and still protect her privacy. It’s a brave thing to do, and it’s a brave thing that so many other women with the BRCA mutation have also shared their stories.

    Excellent post, I agree with so much of what you’ve said. ~Catherine

    1. Catherine, Thank you for reading and taking time to comment. I really commend her for going public. Sometimes it takes someone famous to put a real face on what many of us have been dealing with and will continue to deal with. Of course, a famous face behind a story also brings out the wackos.

  6. The way I first encountered this story was through a tumblr log which exposes rape culture in every day life. If I were a less reasonable person I think I’d find myself hating men after all the comments I read lamenting the loss of Angelina’s (pardon the word) tits, as if that were the most important part of her. Perhaps worse were comments such as “Brad Pitt will be banging the nanny now.”
    Angelina Jolie is a person, not a pair of breasts. The decision she made is a very personal one and not anyone else’s business. Like you, I commend her for speaking out for the sake of other women who may be struggling with this very difficult decision.
    My family doesn’t have a big history of cancer, fortunately. For us, it’s cardiovascular problems.

    1. The Real Cie, Some of the comments are disgusting and unbelievable. I purposely chose not to link to any of the negative crap. It boggles my mind how judgmental people are especially when it comes to women making decisions about their bodies. That’s another post perhaps! Thanks for chiming in. Hope your family is doing well. Cardiovascular problems are not good either.

  7. nancy, great article. The silver lining here in the advocacy department, to me, would be Angelina putting some muscle behind the gene patenting issue! We need her voice and celeb status to shed a spotlight on the craziness of Myriad “owning” the BRCA1 & 2 genes. Thanks for a great post.

    1. Renn, I completely agree and that’s why I had to get that (gene patenting) in there too. Also, healthcare disparity is a huge issue at play here as well. Not everyone has access. Thanks for reading and commenting.

  8. As usual, great writing from the same perch as AJ. Now, as you said, keep the conversation going…. raise some real awareness. Organizations offer screening to the underserved… what happens to those who are found to have a problem. I say, if you are any such organization, and it was YOUR good deed that finds a problem, it is your moral obligation to guide the woman and make CERTAIN she is treated for the disease.

    1. Ann Marie, We really do need to keep the conversation going and get the focus on the bigger issues, not just on Angelina Jolie. I hope she chooses to take on some of these other issues. Time will tell I guess. Thanks for stopping by my friend.

  9. Another articulate and clarifying post Nancy. Thanks! I do commend Jolie, but I commend the every day heroes here in the blogosphere and in every state and city around the country more. Those choosing to be judgmental have likely never walked in the shoes of a woman with BRCA 1 or 2 or a woman/man who has faced a BC diagnosis.

    1. Lisa, I also commend all those every day heroes. That’s why I quoted Marie. And yes, those judgmental types – I guess they’re always with us aren’t they? Thank you for sharing your thoughts, Lisa.

  10. I love your blog so much Nancy. I knew you have the mutation from previous posts. I’m just frustrated that all this fuss is burying the fact that mutation is not common, not even in those with breast cancer. I don’t like her, but I support her decision for mastectomy, in fact I’ve written about supporting that decision for “regular” people some time ago. People are going to react to her the way they react, but what about the rest of us? How can I be proactive–which she is getting praised for–if I don’t have the mutation? Strong family history (although the closest relation was diagnosed a few months before me, too late to be proactive to prevent anything in my case), no mutation…and I still got cancer, which just sucks.
    And even if I were positive, I resent that the prevention offered is the slash portion of the slash poison and burn treatment plan for cancer patients. I hope this celebrity fuss doesn’t become viewed as some breakthrough, when it is not. Is the BRCA test just an empty tool that is sold to look like something is being done in the fight against breast cancer?

    1. Cancer Curmudgeon, You make some excellent points and I understand your frustration. I also am very much not satisfied with this “cut out the problem before it happens” approach. Removing body parts and organs as a way to try to keep cancer at bay – it just seems like we should be able to do better this day in age, but… And I certainly don’t like to think the BRCA test is an empty tool, but your point is well taken. Thanks for adding your insights here. They make a person think. And thanks for saying you love my blog. What a nice thing to hear.

  11. Well said. The naysayers are uninformed. I am like you, BRCA2. I had my ovaries removed at age 42 when I knew for sure I didn’t want more children. My PBM was 5 years later. It was not a cakewalk but I did reduce my risk. Can I still have a bout with cancer? Of course, especially when they discovered DCIS in my pathology after the PBM. I applaud Jolie and hope she stays away from corporate pink ribbons and funnels her energy and money where people really need it.

    1. Beth, Thanks so much for sharing about your experience. None of this stuff is a cakewalk that’s for darn sure. Like you, I hope AJ continues to contemplate her choices carefully because from here on out, people will be watching her every move even more carefully. Fair or not, that’s reality.

  12. What a wonderful, thoughtful post, Nancy! If I were to meet with Jolie, I would ask the same questions and say the same comments. Her celebrity power could be channeled into good for so many people.

    Unfortunately, there are disparities, and Jolie will never experience what it’s like to have limited funds and access to medical care.

    I agree that people should not be judgmental. So many people are quick to judge HER decisions. The decision to undergo any medical procedure is a personal one.

    I’m not BRCA1 or BRCA2 positive to my knowledge, but I did get cancer anyway. I don’t know what it’s like to have the mutation, and it sounds very scary.

    I had a lumpectomy, chemo, radiation — and a few years after that I got a scare. Something on a followup MRI showed a mass in the same breast that had cancer. It turned out to be scar tissue from a lumpectomy and re-excision, but this scare, plus the fact that doctors told me, “Your breasts are so dense, we can’t tell what’s going on in them,” led me to choose a prophylactic double mastectomy with reconstruction.

    Some people questioned my choice as extreme, but they didn’t have breast cancer in breasts that were too dense to know if there was any more cancer. For me, my choice was the only sound choice.

    Thanks for writing such an excellent post on the subject, Nancy.

    1. Beth, Thank you for sharing about your experience. I’m sure it was difficult to be have your decision questioned and to be told your choice was too extreme. I’m also astounded by how so many people feel they can judge a person’s choices here, especially when the person is female. Thanks for reading and commenting, Beth.

    1. Laurie, That’s exactly why I felt I had to mention the disparity issue in my post, as well as the gene patenting issue. Thanks so much for sharing the link to your post. You raised some very good points in it.

  13. Thank you for this article. I have to say as a fan, it’s so nice to read a lot of positive, fair and informative articles about this recent plight of Angie, as oppose to weekly tabloid crap we try very hard to avoid. With regards to Angelina somewhat downplaying the pain of the surgery, I think for longtime fans, we know how Angie is and her inability to calm down and stay put. 🙂 I’m sure the surgery took a toll on her, but like she admitted on her past interviews, she’s someone who doesn’t sit still, who would pace when she’s on the phone, and would always try to do something in her life. Her work right now consists of her UN Special Envoy duty and pre-production of her next film which she will be directing so I doubt it will require her to move rigorously like other women who had the same kind of surgery. Plus, just like her other advocacies, this is something that she won’t leave behind. I’m sure she’ll speak out more about this important subject on our health and will definitely be sharing more than her time to make sure more women will be helped in more ways than one. Once again, Thank You for your thoughts.

    1. JoliePittOnline, As Lindsay said earlier, there’s only so much a person can take on in one article. I’m sure Ms. Jolie’s personal experience was more difficult than the post implied. I’m also pretty sure she was trying to empower other women by making the surgery seem doable. Still, it’s never wise to gloss over a serious surgery and that was my biggest concern with the piece. Overall, I thought her article/message was a good one and again, I applaud her for going public. Thank you for commenting.

  14. This is so well said Nancy. I also applaud Angelina Jolie for coming out with her story and doing tit first before the news made a mess of it. I also applaud Marie for recognizing so many women that have made such difficult choices who no one knows about because of the star factor. It also was great that the issue of the expense of the test was brought to light because the case against Myriad and the Supreme court is so important when it comes to the future of this test and there not being a patent allowed on our genes and that there can be many more companies doing the important research on all genes that need to be discovered in the future.

    1. Susan, Yes, there are many issue tied in here that’s for sure and I hope some of the attention can be “spread around”. Thanks for commenting, Susan.

  15. Like Cancer Curmudgeon, I’ve never been a fan, but I respect her decision. I fear that in the wake of this type of celebrity disclosure it will push back further public perception that a cure is needed. In my opinion the generally perceived definition of Cure evolves with the press. While preventive measures are not a cure, they seem heralded as such to my eyes and ears.

    Thank you for writing this piece Nancy, I always enjoy your balanced views and respect your thoughts immensely. I agree that her post surgery description doesn’t relate the reality of mastectomy for us regular women and men. Although I can’t relate to a non-cancer mastectomy, I can’t believe it was as smooth and sweet as the piece made it sound.

    1. Carolyn, Excellent point regarding a cure. Yes, drastic measures such as amputations are not a cure. The choices are terrible when you stop and think about it. We need to do better. Thank you for commenting and thanks so much for the lovely compliment.

  16. Dear Nancy,
    I appreciate your views on Angelina and the publicity that hopefully will help others.To be brief I have written a book “Even Doctors Cry” which I hope and believe will help others in putting many things in focus.To be brief.In 1994 I(Alvin) was diagnosed with an incurable Non-Hodgkin’s Lymphoma and was given les than a 40% chance of living 6 years while my wife Karen was diagnosed with early breast cancer in 1999 and given a 95% chance of total cure.The doctor(me) survived(2013 so far) but Karen did not.She died of metastatic breast cancer in May 2003.Her premature death was aided and abetted by her onclogist,breast and liver surgeons and the gross failure of the medical system in which human error,negligence,and hubris can,and did take a life.The facts are chilling and irrefutable.
    Not a sales pitch but the web site is great and the book is available in print or e-book.Opinions are accepted and may save a life.
    Alvin Reiter M.D.

  17. Last year, I went through chemo, mastectomy, and radiation. My youngest daughter came to me during that time and told me that after she has had children (she’s still a single college student), maybe in her 30s, she was wondering if a doctor could “hollow out” her breasts and put a “filler” in so she would never have to go through what I was going through. Without realizing it, she was describing what Angelina Jolie had done, and this was last year before Miss Jolie had her surgery. Found out my older daughter was wondering about this, too. Why would two beautiful intelligent young ladies even think that way? Because they know I’m the third generation in a row to get breast cancer and they don’t want to be the fourth. Our family so understands why Miss Jolie made this choice.

    1. Elizabeth, I’m sorry your daughters have to think of these things. Mine does too. It’s our reality and therefore theirs as well isn’t it? Thank you for sharing.

  18. Great article! I concur with everything you said, and how you said it. I don’t mean to imply that I’m big on concurring! I DO mean to say that this was a really well-written article, and . . . I guess I’m feeling a “concur-purr.” I’m glad you wrote it, and I’m glad I read it!

  19. I haven’t reacted or acted in the same way when finding out I was BRCA-2 positive, but the choices we make are personal and dependent on many variables. I would never judge this highly personal decision, especially with her family history. Mostly, I applaud Jolie for using her celebrity platform for good in creating awareness, as she has often done.

  20. Having just been diagnosed with breast cancer which will require a double mastectomy I have heard Angelina Jolie’s name many times in the last couple of weeks. While I do believe it’s both admirable and important that she has shared her story, I wish that it would be acknowledged somewhere that not all women have the option of immediate reconstruction, if at all. She’s a pretty gutsy gal, though, and I’m guessing that she would have had her breasts removed even if it meant ‘going flat’, and she would have been equally as public about it. Please know that I’m not saying that having reconstruction is an easier option than ‘going flat’. I know that none of the options are easy.

    Thank-you for your blog…I’ve just happened upon it, and just started reading it, and I’m pretty sure I’m going to find it helpful!!

    1. Basschick, I’m sorry to hear about your diagnosis. None of this stuff is easy. That’s for sure. I’m glad you found my blog and I hope you do find it to be helpful. Good luck with everything and thank you for sharing.

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