The sexiest woman in the world had a bilateral mastectomy? Really?

angelinaIt is nuts, but breast cancer in young women is becoming a sexy trendy topic. And today, Angelina Jolie, repeatedly named the sexiest woman alive, announced she had a bilateral mastectomy.

As I listened to the news this morning, I thought about my own bilateral mastectomy and its impact on how I thought about myself. Now, Angelina Jolie announced she’s had one and saying she won’t let such a life altering surgery steal her sexuality – why had I? Yes – of course it’s different, this was a preventive measure – but it’s certainly thought-provoking.

I was saddened to hear that Angelina had lost her mother to ovarian cancer and I know personally how much consideration and thought goes into a decision of a bilateral mastectomy. What I think is amazing is that she didn’t have to tell anyone … she could have kept it a secret. But she didn’t – she chose to tell the world, despite the fact that her brand has been built on other people’s perception of her sexiness.

I applaud Angelina’s efforts to raise awareness of the BRCA gene mutation by speaking out. Although I am slightly concerned that the messaging could create panic that all young women should be tested – which is not true. According to what we know today, BRCA (genetic) cancers only account for 5-10 percent of all breast cancer cases, a far cry from everyone.

However, everyone should ask questions about their family history and document all cancers and at what age they occurred on BOTH sides – maternal and paternal (Did you know it’s possible to inherit the BRCA gene mutation from your father?). If you are concerned, our partner organization Bright Pink, has created a tool to help you asses your risk, generating a report to take to your doctor. (http://www.brightpink.org/knowledge-is-power/assess-your-risk/). After using this tool, you and your doctor should talk about the next best steps, which should include speaking with a genetic counselor. This is a personal decision that you and your doctor will make together on a case-by-case basis.

Angelina was not diagnosed with breast cancer (thank God!) – but what about all of the young women, like myself, who have already been diagnosed? What does genetic testing mean for us? Again, your doctor should advise you if genetic testing is a good idea, so please make sure to have the discussion. I was diagnosed with breast cancer seven months after my mother was diagnosed, decided to have the test after genetic counseling, and found out I was NOT BRCA positive. This is information that my doctors and I use to make informed decisions about my treatment going forward – knowledge can be empowering.

Some of the concerns that young breast cancer survivors face every day can include body image issues, sexuality after cancer and the long-term effects of surgery. And it is hard. It is hard to feel sexy when you have no estrogen egging you on. It is hard to feel sexy when all you can see is the scars looking at you in the mirror. It’s hard to feel sexy when your body is no longer the body you once had. These are real issues and it is important to raise awareness of these survivorship issues and their impact on the quarter of a million young women who have been diagnosed with breast cancer in the US before their 41st birthday.

So as we watch the media unfold around Angelina’s choice to share this private decision, I hope that all of us use this news as an opportunity to encourage people to learn and ask questions about their own family cancer history and raise awareness that young women can and do get breast cancer. For those of you who have learned you have a BRCA gene mutation or would like to discuss concerns that you might be at risk with other young women in the same boat, YSC’s online community has a discussion group just for you: http://community.youngsurvival.org/index.php?/forum/9-risk-and-genetics/

Comments (23)
Categories: YSC SYNC - Survivors

23 Responses to The sexiest woman in the world had a bilateral mastectomy? Really?

  1. julie bach says:

    I agree with most of your sentiments. It highly concerns me that the media spends more time covering elected procedures and basically positioning them as an insurance policy. I am concerned for the message that it sends young women because honestly 50-70% of cancer can be prevented from lifestyle choices. It would be great if the media spent as much time on this as they do not the fear factor. As a daughter of two children who died from cancer, my mother’s ovarian oncologist looked at me hours before my mother died and said — you have two parents that died of cancer. Don’t do it. You cannot start cutting up your body. If you get it, you get it. Go out there and live your life. This is a personal decision, I know. And I believe that I can overcome my genetic potential either that or live the best life that I am capable of living. I work with so many clients who live in fear because they have the gene and every year they live in fear when they go for a check up. The amount of stress that this causes is overwhelming. I totally support awareness, please don’t get me wrong. But I believe that we need to highlight alot more than elective surgeries and making it an act of heroism. — Julie

    • Lori says:

      You said exactly what I was thinking. I am a breast cancer survivor, I can not imagine going through the surgeries I did out of fear instead of necessity. The risks of surgery and

  2. Very good point that not every women needs genetic testing – it’s worthwhile to know your family history on both sides. And then there are the cases that had no warning (like me – no cancer in my family) that are impossible to predict. We are speculating at our page what impact her article might have, and I suppose time will tell. (though there are so many factors that go into a decision to remove one’s breast, as you said.) ~Catherine

  3. Tanja Nielsen says:

    A “sexy trendy topic?” That phrase diminishes our struggle.

  4. I certainly hope this isn’t a trend.
    I was glad that Jolie was accurate in her statements–that isn’t always the case—as we saw withChristina Applegate (http://www.cancer.org/aboutus/drlensblog/post/2008/08/30/did-christina-applegate-send-the-right-message.aspx)

    At the National Breast Cancer Coalition meeting held last week, one oncologist said she is talking to OBY/GYN colleagues to raise their awareness of breast cancer risks. Note that women who have recently given birth have a short-term increase in risk that declines after about 10 years. The reason for this temporary increase is not known, but some researchers believe that it may be due to the effect of high levels of hormones on microscopic cancers or to the rapid growth of breast cells during pregnancy. [Source: http://www.cancer.gov/cancertopics/factsheet/Risk/reproductive-history

    Rebecca H. Johnson, MD, of Seattle (Washington) Children’s Hospital and the University of Washington in Seattle, noticed that evidence from the National Cancer Institute Surveillance, Epidemiology, and End Results (SEER) database suggested that incidence of metastatic breast cancer in young women is on the rise: http://mbcnbuzz.wordpress.com/2013/04/08/a-wake-up-call-for-young-people-with-metastatic-breast-cancer-and-all-of-us/

    Regards
    Katherine O’Brien
    Secretary, Metastatic Breast Cancer Network (www.mbcn.org)

  5. Ilana Morris says:

    A lot of my friends are applauding her, but as a young survivor I feel as though she glossed over a lot of what we as survivors go through and the details of the actual surgeries and their impacts…I felt complelled to respond here…
    http://y4c.com/2013/05/another-response-to-angelina-jolies-statement/

  6. Angela Birke says:

    Her news gets people talking about breast cancer in young women, which is positive. We need preventative measures, screening for breast cancer in young women. BRCA testing is not covered by insurance for those not diagnosed. And it detects such a small portion of possible breast cancer cases. We have pap screenings for cervical cancer but nothing for breast cancer. Mammograms don’t work well with young breast tissue. Maybe this awareness she has raised will help in this search for viable preventative efforts somehow. That’s what I am hoping for.

  7. Beth Harris says:

    I have a lot to say about this topic. The emotions and loss of a woman’s body is totally disfigured when you have cancer and have to go through treatment. It is different for us with cancer. You can’t compare the two. Also the other young woman, can’t think of her name right now, but she is from American Idol, also had a double mastectomy and hysterectomy. She stated she don’t feel any less than a woman because is the in thing to do for awareness. I have a real problem with this. I am 10 days out from hysterectomy my

  8. Beth Harris says:

    And I have no kids! I have lost both of my breast and now my woman parts. If you want to know how it makes me feel then I wish the National news would ask me! These kind of statements really bother me. Thanks for asking!

  9. Carolyn James says:

    Collecting info about breast cancer in one’s family can in some cases be quite difficult – you might have few female relatives, none living, and cancer may have been kept secret. When I was diagnosed at age 41, and in such a situation, I was told it was unlikely my insurance company would approve the genetic testing. I was fortunate that my doctor was supportive and that the nurse at my breast care center was very savvy about getting approval. She succeeded (I am neg. for both BRCA 1 & 2), for which me and my daughter are grateful.

  10. Angelina Jolie was brave to share her elective decision. What is missing from all the coverage is that epidemiologically the removal of the ovaries and fallopian tubes reduces the breast cancer risk up to 50% for BRCA1 carriers and reduces ovarian cancer risk to 6%. (see http://www.mayoclinic.com/health/breast-cancer/WO00095)

    And that surgery, provided you are past your desired child bearing activities, is outpatient, and laproscopic for a huge reduction in both breasts and ovarian cancer risk. Considering that her mother died of ovarian cancer, not breast cancer AND that breast cancer is more detectable than ovarian cancer, it was an interesting choice to elect the mastectomy and not the salpingo-oophorectomy.

    But awareness ensures that more women make their own informed choices about how they screen themselves and live to minimize the probability of cancer in their lives.

  11. Diane says:

    I applaud her!!!! And because she is in the public eye and seen as one of the sexiest women alive I love that she was so open and honest (when she didn’t have to be.) Makes me respect her even more than I already do with all of her humanitarian work etc…. Breasts don’t make women sexy, thanks for backing that up Angelina!

  12. Jan says:

    She revealed this because she could not keep it secret. She is too much in the limelight and it would have been discovered. I don’t think that she is heroic. My mom is heroic. She took care of me through my two bouts of breast cancer as well as my sister. As a carrier of the BRCA 2 gene, I think that she made the right decision. Breast cancer treatment is brutal and scary.

  13. Tanya Brewster says:

    Awareness is fine, concern about ones sexiness is fine, too. But I want to SCREAM at the world WHY??? Why are so many young women suffering? What are we doing to find a cure or prevention? And what MORE can we do? Why do my boys have nightmares every time I have to travel to Houston for my check ups? I am here. I am alive. I am sexy. Let’s put all this concern and outrage to good use—RESEARCH!!!!!!!!!

  14. It has been my understanding that the risk of peritoneal cancer is still high for women who are BRCA + . So it’s not all about the breasts and the ovaries. Research is also increasingly pointing to lifestyle as a factor, and this needs to be addressed more in the mainstream media. Since having had the same surgery after a breast cancer diagnosis, I have been researching ways to reduce my risk of a recurrence, and what I discovered is that there is a lot of mounting research and information about the risk of lifestyle choices that needs to be spoken about more in order to facilitate these lifestyle changes for all women at risk.

    I looked at the website where Angelina went to have her surgery, and even they acknowledge that “Up to one third of all breast cancer is the result of poor dietary and lifestyle choices. Overweight or obese women, for instance, have twice the breast cancer recurrence and death risk.” http://www.pinklotusbreastcenter.com/nutrition/
    I hope that Angelina will continue to speak up about the toxic overload women are unknowingly subject themselves to through make up, pesticides, and other environmental factors. It would help to make the post-cancer world a little easier to navigate as we all strive to reduce our cancer risk as a consumer culture. Hearing “do not eat pesticides” from my doctor were the 3 words that dramatically changed my life (!),.. It seemed almost impossible at the time. It would be a lot easier if Angelina helped us to come together and make affordable quality beauty products and food more available to everyone. In addition, there is currently a lifestyle modification program available to cardiac patients that is reimbursed through medicare, that has been shown to promote healing and literally increase longevity (the telomere at the end of chromosomes got longer… http://www.ornishspectrum.com/ornish-certified-site-directory/specrtrum-programs/). I would hope that anyone serious about getting out the word about reducing a cancer risk would be an advocate for an easy access to this kind of program for all young women at risk.

    On the upside, I think that having had the “same surgery as Angelina” makes it much easier to describe to people (since now everyone knows all the details of this procedure!), and it has a much sexier connotation. .. The only other images of women who came to mind as having had mastectomies before were my 2 grandmothers – lovely, but not as sexy.

    • Bikram says:

      Kat LoJacano Werner also served on the NCI/NIEHS Working Group for the Breast Cancer Environmental Research Program. I had the pelsaure of serving alongside Kat and can attest to her extraordinary commitment to understanding the causes of breast cancer, early onset of puberty and how specific windows of vulnerability to disease risk. She loved this research and contributing to the dialogue. The Research Program will convene in San Francisco in November of 2012 without Kat. She will surely be missed.

  15. Cambra says:

    Why is no one writing about the fact that insurance companies (or at least none that I know of) will not pay for this procedure simply because a woman tests positive for one of the BRCA genes?? I completely understand Angelina’s decision (I would’ve done the same thing if I’d tested positive, though I already had cancer), and I applaud her guts at discussing her experience so publicly. I think it’s an important thing to talk about because it raises general awareness. I also understand why doctors are hesitant to promote stories like hers because they encourage women toward more radical procedures when they may not be medically necessary.
    BUT, even more importantly – even if a woman is able to convince her insurance company to pay the $3,000 for the BRCA genetic testing (no easy feat), HOW MANY WOMEN HAVE A SPARE $30-50,000 TO PAY FOR THIS IF THEY TEST POSITIVE?

  16. Libby Seabrook Brown says:

    Jennifer, I agree with you when you say that not all young women need to be tested for BRAC 1 & 2. I would however suggest that a good model is to “get genetic counseling and an assessment of your own personal risk” as one medical expert pointed out when discussing Angelina Jolie’s decision. Genetic counseling may, or may not, mean you end up getting tested depending on the recommendation made after a thorough assessment. Angelina was quoted as saying, “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.” She said she was told her decision to have preventive mastectomies reduced her chances of getting breast cancer from 87 percent to under 5 percent.She also noted that she started with her breasts as her risk of breast cancer is higher than her risk of ovarian cancer, and the surgery is more complex.

    As a retired registered nurse, I applaud Angelina’s decision to share her medical choice – along with her rationale for that choice – with the public in hopes of helping other young women. In addition, she has surely raised awareness that young women can and do get breast cancer and stimulated discussion that could lead to increased funding of much needed research in this area.

  17. Joy Simha says:

    I am so proud that there are so many well informed women reading Jennifer’s blog. This makes me feel better this morning. I have been trying not to listen to the news because truly there are so many factors that go into every woman making healthcare choices on a daily basis and we need to take those very seriously and the media has been doing a disservice to women everywhere by glossing over it all. Angelina had to tell the American public about her journey because you can look at her and notice the difference in the size of her breasts. She needed to tell America why she made those choices. She is one woman, who made some choices and she did what was best for her. That does not mean that it is best for everyone. The NBCC has put their reaction to her announcment on their site. It puts it all in perspective.

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  19. Talena velez says:

    I can’t believe she thinks that would stop cancer. If its gonna develop, then it’s going to develop. I’m sure she was skin and nipple sparing, so what was the point?

  20. Amanda says:

    The result of this publicity led to conversations with young women at work about risk and where to get help. I am a 12 year young survivor. There are 2 younger women in my office that shared they have a strong family history of breast cancer and/or ovarian cancer. They knew they should be doing something now that they are in their early 30′s, but weren’t sure what to do. They pondered whether they needed to follow suit with AJ. It was an opportunity to provide local resources to them in KC area. And the conversation AJ started with her announcement may have encouraged them to take action. So, for these two women it was a helpful conversation starter to find them resources.

  21. Chemobabe says:

    The comments on this post are among the most intelligent I have read on the subject. Kudos for that.

    While folks here have pointed out the important medical issues, part of what came up for me in the aftermath of the publicity was how socially acceptable it is for women to loathe their bodies. That may sound like arbitrary PC feministing, but it’s consequential when we think of prophylactic mastectomies. How much is it a choice for women to get this surgery when so much of the chatter is about “upgrading tatas”?

    I had bilateral mastectomies after a young breast cancer diagnosis and ambiguous genetic information. I am coming to terms with my new body, but it is a compromise, the result of a sacrifice I made to stay alive. It is not an upgrade.

    http://www.chemobabe.com/2013/05/the-chatter-about-jolie/

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