In light of Angelina Jolie’s announcement that she underwent a double mastectomy to prevent breast cancer, we asked Joi Morris, a woman who went through a similar ordeal, to share what every woman needs to know about hereditary breast and ovarian cancer risk. Morris is co-author of Positive Results: Making the Best Decisions When You’re at High Risk for Breast or Ovarian Cancer. —BBL Editor
Angelina Jolie has made a career of playing strong women in film. By revealing that she had undergone preventive mastectomies to reduce her breast cancer risk arising from an inherited BRCA1 mutation, she is showing her mettle in real life. She wrote:
“I hope that other women can benefit from my experience. Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness. But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action.”
Jolie, who is 37 years old, is fortunate to have access to the best medical care available. She could make the many decisions required with the best information available on her cancer risks. I too faced these decisions after learning of my BRCA2 mutation. I too was fortunate to have access to excellent health care and the support of a loving husband. But the choices are nonetheless daunting and emotionally fraught and far from simple or straightforward.
When to Seek Genetic Testing
The first decision is whether to seek genetic testing. It is estimated that more than 750,000 people in the United States carry a mutation on either the BRCA1 or BRCA2 gene, with approximately 90% of them not aware they are at risk. Jolie could act to protect her health because she knew her BRCA1 status. I took the test because my doctor recognized that my family medical history suggested a risk for a BRCA mutation. My mother is a breast cancer survivor who was diagnosed at the age of 43, one warning sign of a BRCA mutation.
Should you consider genetic testing? Not everyone should be tested, but if you answer yes to any of these questions, then you should seek out a genetics professional to discuss your family history and the appropriateness of genetic testing:
- Do you have two or more relatives with breast cancer?
- Have you or a relative had both breast cancer and ovarian, fallopian tube or peritoneal cancer?
- Have you or a relative had breast cancer in both breasts?
- Have you or a relative had breast cancer before age 50?
- Has any male relative had breast cancer?
- Are you an Ashkenazi Jew with any family history of breast or ovarian cancer?
- Do you have any relatives who have tested positive for a BRCA mutation?
How to Reduce Your Risk
If you do test positive for a BRCA mutation the decisions don’t get any easier. Women have essentially three options to reduce their breast cancer risk:
- Surveillance: MRI alternating with mammography every six months
- Chemoprevention: taking medications such as Tamoxifen to reduce breast cancer risk
- Preventive surgery: removing the breasts
Surveillance does not prevent breast cancer but is designed to detect it early enough that it can be cured. Risk-reducing drugs have side effects. As a result, many women with BRCA mutations consider preventive surgery. But preventive surgery involves decisions about different mastectomy techniques and ways to reconstruct your breasts. Which approach may be right for you is highly personal.
Jolie’s medical journey is far from over. People magazine reported today that the actress is also planning have her ovaries removed to handle her risk of ovarian cancer, which is also associated with the BRCA1 mutation. Her mother died of ovarian cancer, and Jolie is close to the age of 40 when doctors recommend that BRCA1-positive women consider removing their ovaries to reduce this risk. Preventive surgery to reduce ovarian cancer risk, called bilateral salpingo oophorectomy, can plunge young women like Jolie into surgical menopause, with yet another host of medical issues and related decisions.
If you are worried about your BRCA status, know that you are not alone. There are resources available to help you understand and navigate the difficult choices you face. In 2006 when I discovered I had the BRCA2 mutation, the only other person I knew who had it was my mother. I found my way to FORCE: Facing Our Risk of Cancer Empowered, the national nonprofit dedicated to fighting hereditary breast and ovarian cancer through support, education, advocacy and research. I wrote my book, Positive Results: Making the Best Decisions When You’re at High Risk for Breast or Ovarian Cancer, because I wanted to share the information and resources I discovered with other women in my situation.
Angelina Jolie wrote that her decisions made her feel empowered. Knowledge can do that. I applaud Ms. Jolie’s decision to make public her highly personal, life-affirming decision.