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?