Angelina Jolie Effect
Shortly after Angelina Jolie Pitt announced her most recent medical news, her decision to have her ovaries removed, I was asked to write an essay about the impact of her experience on the public. My hospital has sent this piece to several sources, and I was surprised and pleased to see that it has been picked up by a few. I will be going on a live talk show at WBZ next month to talk more about this.
“The Angelina Jolie Effect:”
What You Need to Consider Before Deciding about Breast Surgery
By Hester Hill Schnipper, LICSW
It’s been two years since Angelina Jolie Pitt had a double mastectomy, surgery to remove her breasts, and two weeks since she had an oophorectomy, surgery to remove her ovaries.“The Angelina Effect” continues to influence critical decisions among women with breast cancer. Ms. Jolie Pitt’s New York Times Op-Ed piece on March 24th indicated that every woman must make her own decision with the guidance of her doctors. However, some of these decisions may be ill-advised.
Jolie Pitt’s mother died of breast cancer, and Ms. Jolie Pitt carries the BRCA1 gene mutation. She estimated this gene gave her an 87% chance of developing breast cancer and a 50% chance of developing ovarian cancer. Her choice was to have preventive, double mastectomies and reconstruction in 2013 and, in 2015, an oophorectomy.
She indicates that she delayed this second surgery due to reluctance to catapult her body into menopause. This is a concern for many women, and, no doubt, a bigger concern for an actor who is so well known for her physical beauty. It is important to remember that menopause, whether natural, surgical, or chemical, is not necessarily a terrible experience. Many women are delighted to lose their monthly menses, and many women do not suffer intense hot flashes or other distressing physical changes. Yes, we all get older and likely look older, but there is a great deal of variability in the experience. The surgery itself, often laparoscopic, is much less physically, and usually emotionally, traumatic than mastectomies.
It is also worth noting that many women, who carry a BRCA mutation, have these surgeries in the reverse order or at the same time. Since there is no good screening for ovarian cancer and since it often is not detected until a later stage, the prognosis is often grim. Women usually have a better survival chance with breast cancer.
Since Jolie Pitt announced her mastectomies, increasing numbers of women have been tested for the BRCA1 and BRCA2 mutations, and many of them have opted for preventive mastectomies to reduce their risk of developing breast cancer. This is true even for women whose doctors have said the surgery won’t increase their odds of survival over a combination of lumpectomy (surgery in which only the tumor is removed) and radiation. Even before Jolie Pitt’s announcement, this trend was already discernable: the percentage of women diagnosed with early-stage breast cancer in one breast who opted for double mastectomies rose from 5.4% in 1998 to almost 30% in 2011.
While much has been written about this trend, I am sharing my observations at Beth Israel Deaconess Medical Center, where, as the Manager of Oncology Social Work, I have been working with breast cancer patients for over 35 years. I have had two breast cancers myself and have been treated with surgery, radiation, chemotherapy and hormonal therapy. This gives me an unusual perspective on women’s struggles and choices. I know a few women who, without a cancer diagnosis, tested positive for a BRCA gene mutation and chose to have surgery. I suspect they may have been even more influenced by Jolie Pitt than those women who actually have cancer and need surgery.
Naturally, all people diagnosed with cancer are anxious and afraid. They are concerned about their children, and they may not think clearly during a stressful period in which huge decisions have to be made. The choice regarding lumpectomy and mastectomy and double mastectomy brings lifelong consequences. Some women, including those who carry a gene mutation, have a medical reason to proceed with double mastectomies. Many women, however, reach decisions based more on fear and inadequate information. The point is that once surgery is performed, you can’t undo it.
A Personal Perspective
Having lived most of my life with two breasts and the last 10 years with one, I can say it’s better to have breasts than not. Of course, the most important thing is being alive, but fear often muddles the facts. Many of my patients express fear about recurrence and survival, but they also talk about ongoing stress, thinking it may seem easier to remove both breasts than to face annual mammograms and MRIs. While it may seem the anxiety will never diminish, this is rarely true.
I always support a woman’s choice to make choices. I often talk to terrified, newly diagnosed women about the need for decisions that will help them sleep. I also remind women that they can proceed with a lumpectomy and radiation and, if the anxiety persists, they can have a mastectomy in the future. Over the course of my career, I have never known a woman who chose the latter. As time passes, the fear diminishes, and life typically resumes a normal rhythm.
Yes, excellent breast reconstruction and plastic surgeons are available. But a reconstructed breast is not a perfect substitute for a natural one. There are scars, little or no sensation, and surgery. And while most women say they’re satisfied with their reconstructed breasts, some wish that they had reconsidered the choices.
Certainly, having cancer is a big deal, as are having a mastectomy and having reconstructive surgery. So think about this carefully. Choose what’s best for you, but only after consultation with your doctors. The Angelina Effect should be part of the conversation, but it shouldn’t be overstated. Breast cancer is rarely a medical emergency, and women can take time to educate themselves, to process their feelings, and to make the best decisions.