Two years ago Angelina Jolie revealed her decision to have a preventive double mastectomy. She made this choice after learning that she has a mutation in the BRCA1 gene, giving her an estimated 87% risk of breast cancer. It also gave her a 50% risk of developing ovarian cancer, which claimed her mother’s life. More recently, Jolie has written about a new medical decision she’s had to face. Given her increased risk of ovarian cancer–and the fact that she was 10 years younger than the age at which her mother was diagnosed, she elected to have her ovaries and fallopian tubes removed as a preventive measure. She has emphasized that her highly personal decision is not the only option for a woman under these circumstances. But it does give us cause to revisit the question: How far should we go to reduce our risk of cancer?
First, let’s take a step back to review the facts: The majority of women with breast or ovarian cancer do not have the hereditary kind. In fact, less than 10% of women with breast cancer and 15% of women with ovarian cancer have it. Still, if you are at hereditary risk or just have concerns, here are answers to common questions:
1. What is BRCA? BRCA is the term for the breast cancer susceptibility gene. There are two types — BRCA1 and BRCA2. While these genes are relatively rare, they convey a much higher risk of breast and ovarian cancer for women and breast, prostate and other cancers for men (yes, men can have the mutation too).
2. Who should be tested for BRCA? Those most referred for genetic testing have a family member who has been:
- Diagnosed with breast cancer before age 50.
- Diagnosed with cancer in both breasts.
- Diagnosed with breast and ovarian cancer.
In addition, having multiple family members with early breast or ovarian cancer–or male breast cancer–increases risk and suggests that genetic testing may be needed.
3. If you test positive for BRCA as an indicator of possible ovarian cancer, should you have your ovaries removed? Clearly this is an extremely individual decision. The decision that was right for Ms. Jolie would not be the same for everyone. It depends on age, BRCA status (1 or 2), the age of relatives at diagnosis, the desire to have children and other health issues. However, removal of the ovaries and fallopian tubes is the only evidence-based way shown to effectively lower the high risk for ovarian cancer – 17% for BRCA2 and 50% for BRCA1.
4. If you have BRCA, what options are there other than having your ovaries removed? If a woman doesn’t feel preventive surgery is the right decision for her, she could opt for intensive monitoring. It’s important to note, however, that currently there’s no evidence showing that intensive monitoring saves lives, especially where ovarian cancer is concerned. This is why many oncologists recommend surgery. Intensive monitoring could include:
- CA-125 testing and trans-vaginal ultrasounds every six months beginning at age 30, or 5-10 years earlier than the diagnosis of the youngest relative.
- Oral contraceptives: these may be helpful in reducing ovarian cancer risk by about 35%, but oral contraceptives aren’t considered a definitive treatment and experts don’t agree on whether they have any affect at all in reducing risk.
5. What are the pros and cons of having your ovaries removed?
The benefit: Reduced risk of ovarian cancer by 80% and breast cancer by 50%. (Yes, in BRCA patients, removing the ovaries also reduces their increased risk of breast cancer.) In addition, a very small percentage of women will still be at risk for a type of ovarian cancer called peritoneal cancer.
The downside: Removing your ovaries triggers a sudden and swift onset of menopause, unlike natural menopause, which happens over months to years. This can worsen hot flashes, cause earlier loss of bone density and potentially increase risk of heart disease. Fortunately, many of these symptoms can be mitigated by hormone replacement. But no medical therapy can match the natural hormones in your body, and we just don’t know the potential impact of taking hormone therapy for years or decades. In addition, some forms of hormone replacement can increase risk of breast cancer.
I wish the answers were simpler, but the reality is that, like all things concerning our health, we have to balance the risks and benefits and–most importantly–our personal desires and goals.