The Angelina Jolie Mastectomy Factor

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Angelina Jolie mastectomy, thesilverpen.com

The Angelina Jolie Mastectomy

Last week was a full-ON Angelia Jolie kind of week. Because so many people have asked my opinion about her decision to have a double mastectomy, I thought I’d weigh in with my reaction to her Op-Ed piece in the New York Times.

So many references have been made to Angelina Jolie’s “preventative” double mastectomy. Let me begin by saying that “prevention” is an incorrect word to use when talking about breast cancer. Unfortunately, at this time no one knows specifically how to “prevent” cancer. All we know now is how to reduce the risk that a person will get cancer, but no intervention is fully protective against acquiring the disease (which, for the record, is an f-bomb!).

One of the Silver Linings of Angelina Jolie’s public disclosure is that it will (hopefully) encourage people (men, too! – I have a friend whose dad died of FBC) to look into their family history. There are many ways to do this, beginning by having a dialogue and asking questions. ONLY if there is a strong family history does it make sense to get the ($3000+!) BRCA1 & BRCA2 genetic test.

My friend Dr. Marsia Weiss, who founded Breastcancer.org was quoted as saying, “These are single, rare gene mutations that most people don’t have. Some women who hear about Ms. Jolie’s case might feel they should get the test, but the reality is that only a small percentage of women actually qualify for it, based on the guidelines.”

Further, The National Breast Cancer Coalition (NBCC) position statement on genetic testing states: “A genetic test for breast cancer should only be utilized with full consideration of its limitations and implications. Genetic testing cannot cure or prevent breast cancer, and cannot accurately predict whether a woman will or will not develop breast cancer. Most women who get breast cancer do not have BRCA1or BRCA2 mutations, and some women with confirmed mutations will never get breast cancer.”

After my diagnosis, I had the BRCA test. The reason that I was tested was because when I was diagnosed, I was under the age of 40 (I was 39). The greatest Silver Lining of my entire ordeal was that I was BRCA negative. In other words, my diagnosis was NOT because of faulty genetics and I would NOT pass any genetic predisposition on to Suddenly Seven.

According to the  National Cancer Institute (NCI), statistically, women who have one or both mutations have about a 60% risk of breast cancer during their lifetimes (not 87% as Angelina Jolie suggested), compared with 12% for women without such mutations.

Not only that, but also according to the NCI, mutations in the two BRCA genes, BRCA1 and BRCA2, account for less than 10% of all breast cancers. This statistic surprises most people. Genetic mutations also account for about 15% of ovarian cancers.

Angelina Jolie’s situation definitely highlights the emotionally charged dilemma facing people with the BRCA mutations. For those people who do test positive for a genetic mutation, it is really important to consider ALL options, beginning with less-aggressive, “barbaric” alternatives to lower the risk of getting breast cancer. Many doctors advise very close monitoring, with screenings via ultrasound or MRIs twice a year. Chemotherapy is another option to reduce the risk of developing breast cancer. There are also clear lifestyle modifications (e.g., maintaining a healthy weight, reducing or eliminating alcohol consumption, and a low fat diet, to name a few) that reduce the risk of getting breast FBC.

Now, I will say that I admire several aspects about Angelina Jolie’s decision, beginning with the fact that from the get-go she states that it was indeed her decision. She didn’t make sweeping generalizations or “should” on anyone. I appreciate this very much.

I am also inspired by the fact that one of the most beautiful women in the world bravely and publicly declared that her breasts do not define her — her power over her health and her body had trumped her dependence on a body part to express her femininity. What an incredible role model. “I do not feel any less of a woman,” she declared. “I feel empowered that I made a strong choice that in no way diminishes my femininity.”

Additionally, there is a great Silver Lining in her disclosure: people will hopefully be more inquisitive about their family history.

The thing of it is there are no perfect options. The most important thing is that people make FULLY informed decisions in collaboration with trusted physicians. Angelina Jolie’s decision is very unique and very personal and doesn’t necessarily apply to every man or woman.

I’d love to hear from you.  What did you think?

 

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Comments

  1. says

    Dear Hollye,
    It was a pleasure to see your interview yesterday on TV. I will definitely buy the book you wrote!
    7 years ago I had a lumpectomy on my self breast and this breast showed this February again pre-cancerous, abnormal cells on top of calcifications. I asked for double mastectomy but doctors seem to prefer breast saving procedures.
    As a longtime BC Advocate and support group leader I now feel that my concerns are not being taken under consideration.
    Please get back to me.
    Ilse
    PS: When was your breast reconstruction surgery performed? Immediately after breast removal? What hospital performed your surgeries?

    • silverpen says

      Thank you so much for your note, Ilse.
      I had my double mastectomy and reconstruction at the same time. I had an expander for about 16 months and then had my saline implant placed.
      If your concerns are not being addressed, I highly recommend that you find someone who can and will address any and all concerns that you might have.
      I hope that this helps
      All my best wishes to you!

  2. Jane Rogers says

    Hollye, I have just discovered your blog and have spent 2 days reading your posts from diagnosis to present. I currently am recovering from bilateral mastectomies and will start radiation next week. Your Silver Linings to FBC have been an inspiration to me. Thanks for pouring your heart and soul into this.

    • says

      Absolutely, Jane. Thank YOU for writing. Sending all of my very very best wishes to you. Please stay in touch. Remember: it takes a village to go through this and I'm here to help.

  3. T Edwards says

    I think it was Jolie's decision to do what she felt necessary; however, it is not up to her to encourage people to do the same.

    There are many factors (many of which you have mentioned) that need to be taken into consideration, especially if women/men do not have health insurance. I see that the cost of this gene testing is expensive. I have not done my research, but is this covered by most insurance companies? And if not, testing really isn't an option for many people but only those who can afford it. Furthermore, again I have not done research, but is this form of elective, "preventative" surgery also covered under insurance? It doesn't seem like it would be, again a problem for many. And recovery time is an issue for people who might not be eligible for paid time off. I could go on (women who are alone and have no emotional support, etc), but I think you get the picture. And I have health insurance thanks to my husband, so I am not speaking for myself–just thinking on a grander scale.

    Jolie made a decision for herself, and that is, ultimately, her choice. But her celebrity should not influence the healthcare decisions of the masses, especially since she is financially in a different category than many people.

    There are many women who have made extreme decisions in regards to their health whose experiences would probably better serve more than less people. Let's hear their "stories" as well in the NY Times!

    Thanks for letting me share this. I don't mean to offend anyone, just adding my two cents worth.

    • says

      Hi There,
      Thanks so much for your note. I really appreciate your reflections on the different factors involved in this process. Your two cents mean so much. I wholeheartedly agree that it is important to hear other stories as well.
      Thank you for writing!
      Hollye

  4. Gretchen says

    Hi Hollye–I just stumbled across The Silver Pen and wanted to let you know that I am a fan already. I've also passed the link along to my sisters. I like the array of topics on your blog and find them to be well written and organized. So thank you for providing me with interesting and informative lunch hour reading ! I wanted to add a few comments to this post in particular. The timing of the whole "Angelina Jolie factor" was quite ironic for me as I had my blood drawn to check for the BRCA1 mutation just the day before she made her situation known to the public. Prior to my younger sisters FBC diagnosis BRCA1 was something I had never heard of. I do admire Ms. Jolie for her decision to be so open about her situation and her decision to help possibly take some control over her own health where possible. Also, I wanted to mention that I was required to have genetic counseling prior to having my blood drawn for the BRCA test. I was given the same statistics that Angelina quoted in her article. "A person that is positive for the BRCA1 gene mutation has up to an 87% chance of being diagnosed with FBC by the age of 70. Ovarian Cancer up to a 44% chance (general population 8% and <1% respectively)". I am still holding my breath waiting to receive the result from my testing…….

    • says

      Dear Gretchen,
      Thank you so much for your kind note and your visit to The Silver Pen. So glad you came.
      MOST importantly, I am thinking about you as you await your test results. The waiting is so so so hard.
      Please know that I'm thinking about you and sending my very best wishes.
      Hope you'll stay in touch.
      Best wishes!
      Hollye

  5. says

    Well I am in the process of getting tested for BRCA1 & 2. My Mom was positive for BRCA2 and also passed away from BC last year. Her Mom had also passed away from BC when she was young. For me what really resonated with her op-ed was her feeling about her children. I'm not sure what the outcome will be for my test, but if I have a chance of preventing my kids from having to watch their Mom go through this process, I would probably opt in that direction. However, agree with everyone that it's important to get all the facts first.

    • says

      Thank you so much for your note, Lindsay. I'm so sad to hear about the death of your mom. Sending all of my very best wishes to you as you go through the testing. Thank you for sharing. All my very best wishes to you. Please stay in touch.

  6. says

    I think you are always articulate, thoughtful, and loving in your words.
    A woman's right to choose her medical decisions is a fundamental right.
    Angelina needs support as does every woman for making a personal and hard decision about her health and her body. The most important thing to me is that every woman, man, and child in the world has access to proper health care and that they have the education and knowledge to make intelligent decisions.

  7. says

    Thank you for this, Hollye. My oldest and dearest friend is going in for a double mastectomy on Thursday. She has all the mutations for all her family cancers. When the Jolie story came out I couldn't click "send" fast enough. I am so grateful this conversation is happening to give her strength the week she goes in. Also grateful for genetic testing. Still a long way to go, but a start. Go science!

  8. Diane says

    Thank you for sharing your thoughts Hollye. As a woman with one breast… thank you F-Bomb, I would have hoped that while Angelina had the spotlight she would have mentioned that although "she" still feels like a woman after reconstruction…..there are thousands of women who feel just as beautiful with one or NO breasts. I just feel this was a missed opportunity to shed some light on the reality of breast cancer for so many women who make this important decision.

    • says

      Excellent point, Diane. Just excellent. Thank you very much for this valuable addition to the dialogue. Sending all my very best wishes to you!

  9. Andrea says

    Another thing we have to remember that BRCA + breast cancer patient's are often triple negative. We all know the aggressiveness nature of and lack of treatment for this type of breast cancer. I wouldn't even think twice if I was BRCA positive to have both my breasts removed.

  10. Gail Hunter says

    I was diagnosed with breast cancer at 34 and I had an aunt and a first cousin diagnosed at young ages so I was encouraged to be tested for the genetic mutation. I was almost relieved when I tested positive for BRCA 1 as it made my treatment decision easier. No doubts that having a bilateral mastectomy was right for me. Eleven years later I really feel that along with the chemo, radiation, and having my ovaries removed – these things saved my life. My mother was diagnosed this year and also is BRCA 1 positive and opted for the bilateral mastectomy as well. We are a TEAM, LOL!!

    While it may not be the answer for everyone – it truly was the right thing for us. I do agree that everyone should know their family history and meet with genetic counselors to find out what their risks are.

    I love reading your posts – keep up the great work!

    • says

      Thank you so much for sharing, Gail! I am so happy that you feel so good about your decision. I think that is the MOST important thing in the world.
      Love your Mom-Daugther TEAM. No better team in the world, if you ask me.
      Thank you for your kind words!

  11. Anonymous says

    Unfortunately, celebs like Jolie, Guiliana Rancic, Wanda Sykes, Sharon Osbourne, etc. will not go public with the secret little side stories of what it is like to live with mastectomies even with reconstruction (if they are the lucky ones for whom it is successful – not all are successful or possible, and sadly if cancer has been present, sometimes radiation prevents it altogether). They give the false sense that you get reconstruction and you get your breasts back and nothing could be farther from the truth. They will not reveal the emotional turmoil of waking up every morning and walking out of the shower only to see scars of remembrance, to have muscle spasms every day for the rest of your life because a foreign object is placed behind their chests. They will not discuss the very private pain of losing all feeling in your chest, to have no sensation sexually where there once was, to lose all ability to breast feed, and to forever feel as though your body has betrayed you. Many of these celebs have never had to endure chemo therapy and lose their hair, their libido or their health because either they didn't have cancer or they are "previvors" like Jolie. Awareness is great, but as you state, BRCA+ is only a very small percentage of the women who will be at risk for breast cancer. I find life after mastectomy very difficult in the bedroom. When will somebody famous speak about this truth? My truth and the truth of many women I talk to? Sadly, their revelations are half truths.

    • says

      Thank you so much for your comment. I am very appreciative and agree with you wholeheartedly! Sending all my very best wishes to you.

  12. says

    Hollye, I appreciated your gathering of the facts on BRCA1 or 2, and getting the percentages correct ; i.e. according to the NCI less than 10% with the BRCA 1 or 2 gene mutations get breast cancer, and a 60% chance, (not 87%) if you have one or both mutations of getting BC in your lifetime. Also these BRCA1 and 2 gene mutations account for less than 10% of all breast cancers. Statistics are never encouraging, but nonetheless these are not daunting enough for me to go to the drastic measures Angelina Jolie has in the hopes of "prevention". Perhaps if after vigilant precautionary measures, (mammograms twice a year, CT scans), and a FBC tumor was found, I may have the BRCA gene test, and if positive then opt for a double mastectomy, but still I can't say for sure.
    I do applaud Angelina for the ability under such duress to make the decision and stick with it; and most importantly not to advocate her decision for others to do the same. The publicity also increases the awareness of FBC and furthers the latest developments in forward thinking. I wish her all the good luck in the world and God bless her.

  13. Mary Beth King says

    Great post Holly. You said it well. Having had a mastectomy and volunteering in a cancer clinic for years I came to discover that cancer can still rear its ugly head even after having a breast removed. BRAC testing, as you stated is not 100%.Nothing is. A friend of mine who is a pathologist that works specifically on this claims that the numbers don't do it justice; too often to dissuade me from getting tested. I know there is the belief that this will still keep cancer at bay, but perhaps the only thing it will do is give someone the feeling that they are safe from its attack. Perhaps to some that is enough. Unfortunately with cancer numbers growing I think we have got to move beyond these measures to the heart of cancer and its causes.

  14. says

    Thank you for putting some facts and statistics to this delicate subject. I made a personal choice to do a prophylactic mastectomy on one side AFTER being diagnosed in the other breast and I am just one of thousands making this choice. I have concerns about the media attention that this has received and especially the inaccurate information being publicized as you illuminate. Yet, I also applaud this actress for taking her health into her own hands, as it were and I am glad doctors did not find malignancies and she did not undergo the other cancer treatments that can and do wreak havoc on one's body, mind and spirit. As always your blog is informative, insightful and eloquently written. Thank you!

    • says

      Thanks so much for your comment, Lynn. I couldn't agree more! …and thank you for your kind words. I appreciate them so very much!

  15. Kim C says

    I was sorry to hear about Angeline Jolie, but it was great to see her come out and advocate for women, men and breast cancer. If it get's people inquiring into their own family history, talking to their doctor or being more diligent about mammograms and so on….. then she's contributed to our greater good. I'm grateful to her for that.
    Prevention is important, but it isn't a cure. Similarly, there is no such thing as cancer free after a diagnosis. These words can keep us in denial.

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