A deeper look at Angelina Jolie’s decision to undergo a double mastectomy – National Consumers League

By Sally Greenberg, NCL Executive Director

Last week the actress and celebrity Angelina Jolie came forward on the OpEd page of the New York Times with the unexpected news that she had undergone a double mastectomy. Jolie disclosed that she carries the BRCA1 gene that sharply increases a woman’s chance of developing breast cancer. Her doctors advised her that she had an 87 percent risk of developing breast cancer and a 50 percent chance of getting ovarian cancer as a result of what she calls a “faulty gene.” What made this story so compelling is that Jolie’s mother, to whom she was very close, died at age 59 after fighting ovarian cancer for over a decade. Jolie talked about how much she wants to see her children grow up and be a part of their lives for a long time in a way that her mother could not. After this procedure, Jolie was advised that her chances of developing breast cancer are under 5 percent. “I can tell my children that they don’t need to fear they will lose me to breast cancer,” she writes.

Jolie also described in great detail that she had three months of medical procedures, including having breast tissue removed and temporary fillers put in place. Nine weeks later, she had the final surgery completed and reconstruction of the breasts with an implant. This is a grueling, difficult, and painful surgery.

The reaction in most camps after Jolie’s column appeared was that she had made a very difficult but very brave decision to have the surgery, that every woman must make up her mind about what is right for her, and that going public is likely to give other women with equally dire genetic information the strength to have this kind of preventive surgery.

Then I read a very sobering piece by my friend and colleague Dr. Diana Zuckerman responding to Jolie’s announcement. Zuckerman is a PhD and president of the Cancer Prevention and Treatment Fund.

She raised serious questions about the advice Jolie received from her doctors, noting that the 87 percent figure Jolie was told was her chance of getting breast cancer, was apparently based on older and smaller studies than those available today.  Quoting Stanford University’s Cancer Institute, Zuckerman argues that newer studies have found that the risk of getting breast cancer for an average woman with BRCA1 is 65 percent. “Since being overweight and smoking increase the risk and exercising and breastfeeding lower the risk, Ms. Jolie’s risk of breast cancer, even with the BRCA1 gene, could be considerably lower.”

Zuckerman says that according to experts, a 40-year-old woman with the BRCA1 gene has a 16 percent chance of getting breast cancer before she turns 50. Compared to 87 percent, 16 percent looks a lot less dire. Zuckerman also points out that with the latest breast cancer treatments and regular screening, the survival rate from breast cancer is higher than ever.   Zuckerman adds that if  “Ms. Jolie (or any other woman with BRCA1) got breast cancer in the future–if she ever did–the treatments available would be even more effective than they are today.”

Zuckerman makes a very important point, “Nobody can second-guess Angelina Jolie’s choice–it’s hers alone to make.” Yes, that is true for any woman.

But before anyone who has the BRCA1 gene rushes out to follow Ms. Jolie’s example, we need to ensure that she fully understands what the true risks are, the improved diagnostic and treatment options, and that she doesn’t base any decision on how a celebrity acted without knowing all the facts.  Most cancer experts are doing their best to explain why double mastectomies are not the best choice for most women in the aftermath of this celebrity’s disclosure.  I hope that perspective – based in the latest science – is not overshadowed  by the publicity that Ms. Jolie’s announcement has received.  This is a teachable moment – let’s make the most of it.