Me and Angelina Jolie

There are many differences between Angelina Jolie and myself. I have breast cancer. She does not. She has the genetic predisposition for breast cancer. I do not. She chose to have a bilateral mastectomy and reconstruction. I did not. I had a unilateral mastectomy. For me, I could not cut off a healthy breast, but more and more women are making the same choice as Angelina Jolie.

Young women with breast cancer are so concerned about recurrence that they choose to remove both breasts when only one or sometimes none (as with Angelina Jolie) have the disease. Several recent studies have shown that more women are opting for what is called a contralateral prophylactic mastectomy, or removing the normal breast in addition to a diseased breast.

A recent survey done by the Dana-Farber Cancer Institute and published in the Annals of Internal Medicine asked a group of women all under age 40 who had chosen to undergo bilateral mastectomy for early-stage breast cancer in one breast their reasons for doing so. Nearly all of the respondents said they wanted to remove both breasts to improve their chance of survival, even though removal of the normal breast does not improve survival for most women.

In my case, the surgical oncologist and plastic surgeon who operated on me recommended the bilateral procedure for practical reasons not for improved survival. Over time the normal breast sags and the reconstructed breast does not. People do not like the asymmetry and have additional procedures on the normal breast to match the reconstructed side.

It was a difficult decision for me, and I went back and forth. I consider myself a practical person, yet I could not go through with unnecessary surgery in the interest of practicality. My surgeons had counseled me that loss of sensation after mastectomy is inevitable. The skin is numb over the entire area. I knew I was not going to like the lack of sensation, but what if I hated it. It had to be done on one side; I accepted that. But the other side was a different story. I decided that the possibility of doing something I would forever regret was greater than the pull of practicality.

Women, like Angelina Jolie, who have the genetic predisposition are at higher risk of developing cancer and thus may benefit from the bilateral procedure, but not necessarily. Even women with the genetic predisposition do not need to have a bilateral or contralateral prophylactic mastectomy. These women can choose regular surveillance, with mammography, instead of prophylactic surgery. They do often end up with cancer but do just as well as the women who elected to have surgery. And, some women remain cancer-free. If I had the genetic predisposition, I think it would be incredibly hard just to watch and wait.

Another option for women at increased risk of breast cancer is tamoxifen. Tamoxifen blocks the effect of estrogen that can stimulate breast cancers to grow. Taking tamoxifen reduces the risk of breast cancer developing or recurring. It’s a complicated, difficult decision whether or not to remove a healthy breast. One that I struggled with.

Breast reconstruction has improved over the years, but a reconstructed breast is still not much like a normal breast. I think many women feel almost obligated to remove a healthy breast even though it doesn’t improve long-term outcomes.

So far, I have been happy with my decision, except when it’s time for my annual mammogram. Never needing a mammogram or a bra, are other perks of a bilateral mastectomy. Both are appealing but were not enough to change my mind. What about you? What would (or did) you do when faced with this decision?