More Women Opting for Double Mastectomy: Is It Justified?

Patient Expert

A new study published this week in the Journal of Clinical Oncology online reports that the number of women opting for double mastectomies (when a single mastectomy was indicated) more than doubled between 1998 and 2003, from 4.2% to 11%. In addition, the number of women having double mastectomies when a lumpectomy was the indicated treatment rose 150%, from 1.8 % to 4.5%. What's going on here?

Well, a whole bunch of things. Surgical techniques have improved dramatically; mastectomy 's just not the brutal operation it used to be. Reconstruction has also become more common, and is usually very successful, cosmetically. In addition, women are better informed about the likelihood of a recurrence. Genetic testing and a better understanding of the different types of breast cancer makes it easier to assess the risk of getting a new cancer in the opposite breast-the reason a woman would choose a double mastectomy.

But those don't seem to be the main reasons more women are opting for a double. The chief reason, as reported by the study's main author, Dr. Todd M. Tuttle of the University of Minnesota Medical School, is fear. Fear of cancer in the other breast. Fear of death.

How justified is the fear of a new cancer developing in your opposite breast, once you've been diagnosed? Well, unless you have invasive lobular breast cancer (which does carry an increased risk of new cancer in the opposite breast), your risk for developing a second cancer in your other breast is the same risk you had of developing your first cancer: 1 in 8 lifetime. If you take off both breasts, your risk of developing cancer is cut by 94% to 96%. In short, you're nearly assured that you'll never have breast cancer again-at least in your breasts.

But that doesn't mean cancer is gone from your life forever. It may have spread from its initial site to a new location; it may come back, months or years later, in your liver, bones, brain, or lungs. A double mastectomy does nothing to protect you against a distant recurrence. Bottom line: If you've been diagnosed with invasive cancer, you're improving your chances for survival very minimally by having a double mastectomy. A double mastectomy isn't necessarily going to save your life.

An article in Tuesday's New York Times quotes Darcy Long, 44, of Maple Grove, Minnesota, who was diagnosed with breast cancer in her right breast in July. Long said, "There was no question in my mind, I was going to have a mastectomy on both sides. I wanted to maximize my survivability, and I didn't want to ever think that I hadn't done everything that I possibly could to prevent this coming back."

I find Darcy's quote upsetting. How much did she really maximize her survivability by taking off her healthy left breast? Not a whole lot. Without the second mastectomy, she would have had as much risk of dying from cancer in her left breast as any other woman in America; pretty low. And cutting off a healthy breast won't "prevent this coming back" AT ALL. The cancer from her right breast would never have "come back" in her left.

I understand fear: the anxiety surrounding mammograms, the "waiting for the other shoe to drop" as the months and years after your diagnosis pass. And it's certainly any woman's choice to have her breasts removed. But I hope the increasing number of women choosing double mastectomies understand just how much "safer" it's making them. And I hope, going in, that they've fully considered the long-term consequences of mastectomy: the loss of a breast, or the replacement of a natural breast with one that has little feeling. The possibility of shoulder issues. The tingling, numbness, and tightness that never goes away, for so many of us. Mastectomy, even with reconstruction, changes your body permanently.

The consequences of removing both your breasts should be weighed against your fear. And that fear, uncomfortable though it is" is it based on real evidence, or is it an emotional over-reaction? You know the woodworker's mantra: "Measure twice, cut once." Replace "measure" with "think," and that's my advice for those of you considering cutting off a healthy breast.

Feb. 26, 2010: Extra Mastectomies Don't Benefit Majority, Study Says