This post has been slightly edited this morning to reflect new information.  I was completely stunned last night when I saw Greta Van Susteren’s tweet last night that read “Angelina Jolie had a double mastectomy.”  I was  stunned further when I read that Jolie had a prophylactic double mastectomy based on the findings that she possesses the BRCA1 gene mutation.   Read her essay here from the New York Times.

So what does that all mean?

First, Angelina Jolie does not have breast cancer.  Her mother, Marcheline Bertrand, passed away in 2007 after years of battling ovarian cancer.  I’m guessing Jolie has known for some time that she carried the BRCA gene mutation.  This diagnosis is determined by a blood test which must be analyzed at a laboratory specializing in genetics.

I wrote extensively about the BRCA gene mutation last year.  Read more to understand how we all have these BRCA genes but not all of us carry the mutation.

Women who test positive for the BRCA gene mutation are presented with several options which can include intense surveillance (mammogram, ultrasound, and MRI), taking Tamoxifen, or prophylactic surgery.

Women who test positive for this gene mutation are presented with several options which include intense surveillance (mammogram, ultrasound, and MRI), the drug Tomaxifen, or prophylactic surgery

Jolie opted to undergo a prophylactic double mastectomy.  This is also commonly called a “preventative” mastectomy or a “risk-reducing” mastectomy.  It means she chose to surgically remove both breasts in an attempt to reduce her risk of developing breast cancer in the future.  Women who are carriers of the BRCA1 gene, on average, have a 65% chance of  developing breast cancer.

I wrote about the difference between a lumpectomy and a mastectomy here.

She explains that after undergoing a procedure known as a “nipple delay” to rule out disease in the milk ducts, leads me to believe she had underwent a nipple sparing mastectomy.  This type of surgery isn’t usually an option for women who have already developed breast cancer.  For Jolie, and other women choosing to have a preventative double mastectomy, this particular surgery involves preserving the breast skin and nipple while all the underlying breast tissue  is removed.

Jolie explains her post mastectomy reconstruction phase included having expanders. A tissue expander is a temporary device that is placed on the chest wall deep to the pectoralis muscle. The purpose of the expander is to create a pocket which will eventually contain the permanent implant. This, I understand, can be a very painful and arduous process.  Over a period of nine weeks, Jolie’s reconstruction process was final when the tissue expanders were removed and replaced with a breast implant.  Breast reconstruction is not as simple as it may seem.  The recovery time is difficult and the breasts may never look and feel like natural breasts.

A couple of important notes from Los Angeles based breast surgeon Dr. Deanna J. Attai:  ”The risk of developing a cancer is not eliminated. There remains a 1-3% risk of developing a breast cancer after prophylactic mastectomy. If the ovaries are removed (due to the increased risk of ovarian cancer), there still is a slight risk of developing ovarian cancer or primary peritoneal cancer, which mimics ovarian cancer in it’s growth and aggressiveness. BRCA mutation carriers are also at increased risk for the development of other cancers, so lifelong surveillance is important.”

Dr. Attai also notes “Some women struggle tremendously with the decision even to be tested; there are implications not only for the patient but for her relatives.”

I applaud Angelina Jolie for sharing her story and starting the conversation again about the BRCA gene mutation.  You’ll remember that Christina Applegate was diagnosed as being BRCA positive after it was discovered she had breast cancer in 2008 at the age of 36.  Sharon Osbourne underwent a preventative double mastectomy in late 2012 for carrying the gene mutation.  And, TV host Giuliana Rancic also underwent a double mastectomy in 2011 but never disclosed if she possessed the BRCA gene mutation.

I tested negative for BRCA 1 and 2 back in 2008 after my own cancer diagnosis.

Genetic testing for the BRCA gene mutation is costly.  Dr. Attai says “Insurance coverage for BRCA testing is not universal, even when the patient meets accepted criteria for testing. Without insurance, BRCA testing is approximately $3000-$4000. In addition, insurance coverage for reconstructive breast surgery varies as does access to skilled plastic and reconstructive surgeons. Many disparities in terms of access to care and quality of care still exist, and these need to be addressed.”

I want to leave you with this from Dr. Attai, who says, “I also feel that it’s somewhat of a shame that in 2013, the best we have to offer patients who are at extremely high risk is prophylactic mastectomy. I hope that I will practice medicine in a time when we have a much less drastic option to offer women and their families.

It’s not a complete win for Angelina Jolie but it’s a whole hell of a lot better than the alternative.

Angelina Jolie: 1  Cancer: 0