The Angelina Jolie Effect
Hester Hill Schnipper, LICSW, OSW-C Program Manager Emeritus, Oncology, Social Work
NOVEMBER 12, 2021
Here are the facts: Angelina Jolie’s mother died of breast cancer, and Angelina Jolie carries the BRCA1 gene mutation. She estimated that this gene gave her an 87% chance of developing breast cancer and a 50% chance of developing ovarian cancer over the course of her lifetime. She had preventative bilateral mastectomies and reconstruction in February 2013. Since 2013, genetic testing has become even more sophisticated, and genes other than BRCA1 and BRCA2 have been identified as possibly increasing risk for breast cancer.
Choose treatment in careful conversation with your doctors and with an understanding of the realities and the accurate numbers.
When Angelina Jolie spoke publicly of her decision, the “Angelina Jolie Effect” was noted worldwide. This has meant that more women have been tested for the BRCA1 and BRCA2 mutations, and more women have opted for prophylactic mastectomies to greatly reduce their risk of developing breast cancer. It has also meant that more women who have been diagnosed with breast cancer have chosen to have bilateral mastectomies when their doctors have told them that these surgeries will not increase their odds of survival more than having a wide excision/lumpectomy and radiation. In fact, the percentage of women who have been diagnosed with early-stage breast cancer in one breast who opted for bilateral mastectomies rose from 5.4% in 1998 to almost 30% in 2011. By 2017, approximately 1 in 6 women diagnosed with early breast cancer chose this surgery. It is interesting to note that the numbers vary enormously from state to state. For example, one study reported that 15% of women living in DC had bilateral mastectomies while 49% of women living in South Dakota made this choice.
Her willingness to be open about her history and choices undoubtedly increased awareness and saved lives. The concern has been that some women with a cancer diagnosis rushed to this surgical decision without fully understanding their risks and the facts of their individual situations. Since a number of years have passed since Angelina Jolie spoke about her decision, the situation has evolved. Women now faced with a positive genetic test or a new breast cancer diagnosis may not think about her. However, her impact on the breast cancer surgical world was enormous. It increased public awareness and legitimized a tough choice.
All people who are diagnosed with cancer are afraid. Most of us immediately think: “Am I going to die?” If we have children, the next worry is about them. No one who has just heard a cancer diagnosis is thinking with the same level of clarity that she usually does. We are overwhelmed, at least for a while, with anxiety and sadness. It is unfortunate that huge decisions have to be made during this stressful period. Making a choice about lumpectomy vs. mastectomy vs. bilateral mastectomy brings lifelong consequences. There are some women, including those who carry a gene mutation, who have a medical reason to proceed with bilateral mastectomies. Most women, however, have reasons related to fear and an inaccurate understanding of risks and benefits and survival rates. Once the surgery is done, you can’t go back and redo it. Once a breast is gone, it cannot be replaced.
Having personally lived most of my life with two breasts and the last fifteen years with one, I can say with confidence that it is better to have breasts than not. I can say with even more confidence that the most important thing is being alive and healthy, but the fear too often muddles the facts. Women express fear about recurrence and survival, but they also talk about the ongoing stress and worry. It may seem easier to remove both breasts than to face annual mammograms and, possibly, breast MRIs. It may seem that the intense anxiety around diagnosis will never diminish, and that a full night’s sleep is a vanished memory. Both things are rarely true.
Let me be clear: I will always support a woman’s choice to make the best choice. I talk often with terrified newly diagnosed women about the need to make decisions that will help them sleep both tonight and five years from now. I sometimes remind women that they can proceed with a lumpectomy and radiation and, if the anxiety persists and feels impossible, they can come back for a mastectomy in the future. Over the course of my career, I have never known a woman who came back. As the months and years pass, the fear diminishes, and life resumes a normal rhythm.
Yes, there is excellent breast reconstruction available, and we are blessed to have kind and competent plastic surgeons at BIDMC. None of them would ever say that a reconstructed breast is a perfect substitute for a natural one. There are scars, little or no sensation, and a lot of surgery to get through. Most women are pretty happy with their reconstructed breasts, but some regret the decision and wish, at least, that they had taken more time to consider the choices. Having cancer is a big deal, a mastectomy is a very big deal, and reconstructive surgery is a huge deal. Think about this carefully.
Choose life always. But choose treatment in careful conversation with your doctors and with an understanding of the realities and the accurate numbers. Breast cancer is rarely a medical emergency, and women can take time to educate themselves, to process their feelings, and to make the right decision for life.