So why are we hearing more about women — young women like the 24-year-old Miss America — deciding to have both breasts removed without a diagnosis? Is this a crazy media seeking maneuver? Actually there is data to say no, that this is a growing documented phenomena — more women are electing to have both breasts removed (bilateral mastectomies). Some of these women have breast cancer in one breast and decide to have bilateral surgery, some have a known genetic mutation (BRCA 1 or 2) which increases their risk, some have a family history without a known gene causing the disease or some just make the decision for personal reasons, usually to relieve anxiety.
Breast surgery has changed in the last 25 years
When I started out in this field some 25 years ago, things were very different. Breast surgery was much more mutilating. Women would wake up after surgery with huge, ugly scars, sunken chests and arm pits or flopping extra fat. Years later they’d have swollen arms, pain in the chest, scars and difficulty moving their arms. Women coped in the closet with their deformities, bought special bras with prosthesis (falsies) and went on with their daily lives as well as they could. Some found some humor in it all. I hear patient stories about their older family members losing their prostheses, having them pop out at inconvenient times or younger family member discovering one and adding it to his or her play box. After this time period, it’s not surprising that the mantra for many years was “Save your Breast”.
But things have changed. Surgery is much different these days. Women can have skin sparing surgery or even nipple sparing (the nipple is not removed). Reconstruction is typically done at the same time as the mastectomy so women do not wake up flat chested or concave chested. We do not have to take as many lymph nodes from under the arm so “lymphedema” arm swelling is much less common than in years prior. Plastic surgery has made great strides and there are several options for women — from implants (silicone or saline) to using a woman’s own tissue from her stomach, her back or her buttocks. Surgeons are now looking at using fat grafts or growing a woman’s fat in a test tube and putting it back but this is not standard yet. While all these procedures take more time in the operating room (some types of surgery using the abdomen take 10-12 hours) and have risks involved, the results are cosmetically superior without increased risk for recurrence.
What are the risks?
Statistics show that women who have cancer in one breast do have a slightly higher risk of developing cancer in the other breast but it is not as high as once thought nor as high as many women assume. For a 50-year-old woman with an early stage breast cancer in one breast, her lifetime chance of developing breast cancer in the other breast reaches only 8%. Now for a woman with a known BRCA gene mutation, the risk may reach as high as 80%, but if she is diagnosed with breast cancer, still her risk in the other breast is only 40%. The risk of developing breast cancer in the other breast has been reduced because most women receive some sort of additional treatment besides mastectomy, such as chemotherapy, anti-estrogen medication or removal of the ovaries.
But what I see happening is that women are well informed, they understand the statistics but still want to live a normal life and not worry about breast cancer. Unfortunately no doctor can tell them what they can do to prevent the disease because we don’t know what causes it. It is not like brushing your teeth and flossing prevents cavities or not smoking prevents most lung cancer. There are no breast rehab programs like we have for cardiac patients. Taking Tamoxifen (the most common anti-estrogen pill) seems to have more side effects than most cholesterol lowering medications and is not as well accepted. Exercise and diet have been shown to cut down the risk but are difficult to adhere to and not a sure bet. I see patients who are vegan marathon runners who still get breast cancer. I see women who are short, tall, lean and overweight all get breast cancer.
Stay informed and remain true to yourself
So what is my conclusion? The decision to undergo a preventative mastectomy is immensely personal. Women have the medical facts — most are quite well informed by their doctors, check the internet, and talk with friends and acquaintances, but it comes down to how they want to live their life, how they can sleep at night, and how they can be intimate with others and themselves. I have patients who have breast cancer and are doing everything in their power to not lose their breast or breasts. Others want both breasts removed for no apparent medical reason (maybe a friend died of breast cancer and they have lumpy breasts), but most of them are struggling with the question, How do I continue to live with this uncertainty?
While removing both breasts does not give a woman zero percent chance of the disease coming back or getting it in the first place, it does remove a significant amount of risk and also eliminates the need for screening mammograms, MRI’s and excessive doctor appointments. The decision is one that most women weigh carefully, and for now, having bilateral mastectomies seems to be winning for a lot of women.