Bilateral Mastectomies and Anxiety
Hester Hill Schnipper, LICSW, OSW-C Program Manager Emeritus, Oncology Social Work
FEBRUARY 13, 2019
Did anxiety influence your choice for more surgery?
It is estimated that the rate of prophylactic bilateral mastectomies in the US is increasing by 14% each year. Prophylactic means preventive, not because there is cancer there. A few years ago, this was called the Angelina Jolie effect, but that phrase has faded with time. What is most interesting is that this increase continues even though the surgical/medical guidelines and most clinicians’ efforts discourage the practice except for women who carry a gene mutation (BRCA1 or BRCA2) or have other specific medical issues.
For example, the National Comprehensive Cancer Network guidelines state that women with a known genetic mutation “may be considered for prophylactic bilateral mastectomy for risk reduction.” They go on to discourage bilateral surgery in women who have been diagnosed with cancer in one breast. The American Society of Breast Surgeons states that with the possible exception of gene mutation carriers, bilateral prophylactic mastectomies do not appear to be associated with a survival benefit. This is powerful language from a powerful group, and it is hard to square it with what is actually happening.
In my oncology social work practice, I have worked with countless women who struggled with their choice of breast cancer surgery, and most believed that removing both breasts would increase their chances of staying well. What their doctors told them mattered not a whit; the larger surgery intuitively felt safer. Some women wanted to remove both breasts because they did not want to ever again have to deal with the stress of a breast cancer diagnosis; giving up annual mammograms and/or breast MRIs is sometimes seen as a fringe benefit. There is a difference in these two worries: dying from the known breast cancer vs. having a future breast cancer diagnosis. Although I have never seen a study that compared the incidence of the two fears, my observation has been that many women who choose bilateral mastectomy think that they are increasing their odds of staying alive from their current breast cancer.
It bears restating that cancer in the breast does not kill us. Breast cancer becomes a lethal illness when it has spread or metastasized to other parts of the body. Removing a healthy breast does nothing to reduce the odds of this happening. Surgery to remove the known breast cancer, often followed by radiation, and the addition of hormonal therapy and/or chemotherapy are the treatments that keep us well. The initial surgery is important because it removes the known cluster of cancer cells. The systemic treatments are important because they attack any cells that may have already left the breast.
Women are smart, and I assume that this basic cancer information is plainly shared by surgeons at the beginning. So, why do so many women insist on bilateral mastectomies, exposing themselves to more risks from more surgery and losing a healthy body part while not increasing their survival odds? This is especially puzzling when the recommended surgery is a lumpectomy or wide excision, not a mastectomy. I understand, especially for large breasted women, the worries about symmetry, and the sense that being lopsided is more difficult than being flat or having reconstruction. When considering breast reconstruction, some women are hopeful that the cosmetic outcome will be better, that they will looks better matched if both sides are done.
The only plausible reason is fear. For sure, cancer is terrifying, and there is plenty to be scared about. When women speak to each other or go to various online sites and chat rooms, they often converse about this, and receive support for bilateral surgery. In the immediate throes of a cancer diagnosis, many women just want to get them off and are reacting from panic.
Many times I have talked with women at these moments and helped them step back from the ledge. I reassure them that they can change their minds later. If, a year or two in the future, they find that their anxiety is unbearable, they can return for more surgery. There are generally no issues with insurance coverage. I have never known anyone to wait and then choose to have the healthy breast removed. Instead, as time passes and life returns to more normal rhythms, their intense panic usually subsides.
I don’t have a solution here, but I do know that we have scared ourselves to the point that sometimes we can’t make careful, thoughtful, evidence-based decisions. I always support a woman’s right to choose, but it is imperative that she understands the facts and knows the real impact--or the lack thereof--of the decision she makes.
Did you have a hard time with a surgical decision? What did you choose? Are you glad you made the choice that you did? Please share you story in the BIDMC Cancer Community.