The rate of women choosing a double mastectomy as a response to BRCA and cancer diagnoses is on the rise. Some link this to the rise of celebrities, television shows, and movies highlighting the decision to have a mastectomy. But when you speak to the everyday women who made the same decision, you won’t hear the words Angelina Jolie, celebrity, or breast implants; you’ll hear family, risk, recurrence, and life.
In 2013, a widely circulated op-ed written by Angelina Jolie-Pitt about her double mastectomy made waves across the world. The famed actress, mother, and humanitarian announced that she had just endured a three-month process of a Prophylactic Bilateral Mastectomy (PBM) and reconstruction. This procedure is the preventative removal of all breast tissue in both breasts, followed by reconstruction using silicone, saline implants, or one’s own fat and tissue.
Angelina had previously made her mother’s death—a result of ovarian cancer—very public. But we had yet to learn that both her mother and she carried the BRCA1 genetic mutation, which increases the risk of breast cancer by 87 percent and ovarian cancer by 65 percent. Angelina’s piece in the New York Times was one of the first public discussions around genetic mutations and the preventative measures available to their carriers.
Two years later, Angelina wrote another piece on the next step in her preventative surgeries—a Bilateral Salpingo-Oophorectomy (BSO). As my female coworkers congregated around the lunch table to discuss Angelina’s bold and public choices, I was on the subway on my way to my gynecologist to receive the results of my own BRCA test.
It Happened To Me
In early March 2015, I stopped by the doctor’s office for a routine birth control update and was given a form to complete on my family history. I noted two aunts died of breast cancer and my grandmother died of ovarian cancer. The nurse practitioner suggested I take a quick blood test to determine my potential risk of breast cancer. I was 27 years old.
Years ago, I read that there were genetic tests I could have done to find out this information, but I was told I wasn’t a candidate as this testing was predominantly done in people of Ashkenazi Jewish descent. But within five years, the science and the understanding of this gene had advanced enough for the test to go beyond a particular demographic.
So, back to March 2015, where my mother and I were sitting in a cold waiting room when the nurse explained my results. There are many things I would love to have in common with Angelina Jolie, namely sharing a bed with Brad Pitt and advocating for human rights across the globe. But instead, Angelina and I shared the dangerous BRCA1 mutation breast cancer gene.
When you’re handed the results to this genetic test, it comes along with a list of recommended breast and gynecologic oncologists who can better explain your options. For women with the BRCA mutation, the choices are slim: surveillance of your breasts and ovaries in six month intervals or a risk-reducing surgery.
As I learned my options, I began to research double mastectomies and the possible outcomes. My research pointed me to many celebrities who underwent single or double mastectomies because they either had breast cancer, the BRCA mutation, or both. Angelina was in the company of Christina Applegate, who chose a double mastectomy after her breast cancer diagnosis and BRCA testing. There was also Giuliana Rancic, Hoda Kotb, Sharon Osbourne, Kathy Bates, Tig Notaro, Wanda Sykes, and Olivia Newton-John.
In the interviews with these women, you hear a lot about risk and not wanting to take the chance of recurrence. There are two camps in this approach: those who believe it’s a strong and empowering move to take one’s health into their own hands by nearly eliminating the risk of cancer and those who think it’s a drastic response to something that may or may not occur.
Italian-American television personality Giuliana Rancic and her husband Bill opened up in an interview with Glamour magazine. They discussed their experience finding out Giuliana had breast cancer while undergoing fertility treatments.
Watch BBC Presenter Claire Helmut talk about her choice for a preventative double mastectomy.
Double Mastectomy: Media’s Cut
Discussions around breast cancer and genetic mutations aren’t limited to interviews and op-eds. More and more television shows are delving into the topic. Eight years prior to Angelina’s admission, the ever-popular and original Shonda Rhimes drama, Grey’s Anatomy, dove into risk-reducing surgeries. During the Season Two episode Let It Be, a doctor’s’ friend and husband visit’s the hospital for advice and ultimately, a PBM and BSO.
As with any Rhimes show, the news spreads quickly and all the characters weighed in. Most notably, Dr Stevens, played by Katherine Heigel, suggested a third option beyond surveillance and preventative surgery: “Take your chances, get cancer, and fight like hell to survive”.
In its latest season, Freeform’s popular show The Fosters deals with the same situation and same division among characters.
They’re Just Like Us
With the presence of breast cancer and the choices women face omnipresent in the media, the question arises of whether or not the attention to this subject is the cause of rising mastectomy rates among women.
According to studies by the National Institutes of Health, mastectomy rates have steadily risen by 21 percent between 2005 and 2013 while rates of breast cancer occurrence have remained steady. Another study states that coverage of celebrities undergoing mastectomies may be the cause, stating that “skewed coverage”– coverage that states diagnoses and treatment but not family history, genetic mutations, etc– is to blame for women believing the only response to early stage cancers is a mastectomy.
Now, I nearly failed statistics in grad school but I am familiar with the notion of causation versus correlation and am willing to bet the relationship between celebrity influence and mastectomy rates are most definitely correlated but am reluctant to say that it’s the cause.
When receiving a diagnosis of breast cancer or a genetic mutation, the patient is presented with multiple options, some of which will include surveillance, radiation and chemo, and mastectomy, depending on your diagnosis and risk. Physicians I’ve spoken with at both Weill-Cornell and Memorial Sloan Kettering Cancer Center have stated they would by not perform a mastectomy on a woman who is not at high risk for breast cancer or who has not received a breast cancer diagnoses. What a person is not given is a copy of interviews and photos of celebrities who have undergone a mastectomy.
When I learned about my risk, I joined a private Facebook group, the BRCA Sisterhood. Some of the members have become minor celebrities in their own right, drawing tremendous attention to BRCA. Others are simply strong women who have either been diagnosed with breast and/or ovarian cancer or are at higher risk. The vast majority of women have undergone or are about to undergo surgery, either preventative or in response to their diagnoses. I recently surveyed the group asking what effect women like Angelina Jolie have had on their choice and the response was the same: her choice had no effect on their decision making. Some of the women even found it laughable or offensive that such a serious decision would be reduced to a celebrity fad.
In particular, Monique Haynes notes that while her family all tested negative for the BRCA mutation, watching her mother, two sisters, aunt, cousin, and grandmother all suffer through breast cancer was all she needed to make her decision. As she succinctly put it, “[T]here are many people who think I made a rash decision; especially since we aren’t positive for BRCA. I know I didn’t. Cancer takes you farther than you want to go, keeps you longer than you want to stay, and costs you more than you’re willing to pay.”
The widely-felt opinion is gratitude toward women like Angelina Jolie-Pitt for drawing attention to the BRCA community and the strength and struggle it takes to choose something as drastic as surgery. Erin Gunter Kirkby, a young wife and mother living in Baltimore, is nearly eight weeks out of her mastectomy, which she decided to have after testing positive for a BRCA mutation seven years ago at age 23. Erin credits her decision to science:
“When I found out about my mutation, I was working on a PhD in molecular biology… I wouldn’t make my decision because of a celebrity, but I am thankful for the attention that people like Angelina Jolie have brought to the topic.”
The Angelinas and Christinas and Hodas have certainly made our choices easier to explain. When asked about my surgery, I often find myself referencing Angelina’s article because it’s a familiar point of reference. But these same women, while in the public eye, based their choice on science and the extreme likelihood of getting a cancer diagnoses during one of their bi-annual visits.
The Choice Is Yours
For many women who have had cancer and chose double mastectomies, they’ve likely endured chemo and/or radiation and have voiced not ever wanting to go through that again. Sandy Williams Martin, 37, had no significant family history and was diagnosed last year with ductal carcinoma in situ, a type of non-invasive breast cancer that begins in the milk ducts. As part of her treatment, she chose a double mastectomy because she was terrified to hear “you have cancer” again.
Whether diagnosed with breast cancer or a genetic mutation, the choices you face are deeply personal and influenced by a variety of factors. Personally, I’m grateful for all women who have shared the stories of their double mastectomies, because at my age, I could not comprehend my options and needed to hear other people’s stories.
And so, to the people of the world who think women choosing mastectomies aren’t fighters or that it’s simply fear or vanity motivating us, I ask you to sit beside a woman who has just had a mastectomy and see the strength in her eyes. You can’t miss it.
Suzanne Zuppello is a freelance writer living in Brooklyn. Her writing weaves health, wellness, and politics with pop culture and personal experience. Suzanne’s work lives on her website, partlyprivate.life.
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