May 14, 2013

By now, you probably know of actress Angelina Jolie’s choice to undergo preventive double mastectomy, and her must-read op-ed in Monday’s New York Times.

In her specific case, the decision was a tough, but logical one given that the benefits of the procedure dramatically reduced future risk of breast cancer. It’s never an easy decision to undergo surgery. It must have been even more difficult for someone like Jolie, whose income is partly tied to her looks.English: Angelina Jolie at the Cannes film fes...

Double mastectomy isn’t the answer for everyone. Jolie was at very high risk because she is among the small percentage of women who carry the BRCA 1 and BRCA 2 gene mutation.

As Jolie points out, genetic testing is expensive, currently not covered by all insurance plans, and therefore only viable for a small segment of the population. “The cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women.” There are other forms of breast cancer – which may be more difficult to detect and treat.

What are the choices for those women who do not have the resources for such gene testing? Disparities along racial, education, and socioeconomic lines in both incidence and screening are well documented. Women who have other risk factors, who are without access to the top oncologists, plastic surgeons, and other care providers need to know their choices.

Many breast cancer advocates encourage regular mammograms, along with clinical and breast self-exams. Planned Parenthood provides women with screening, diagnostic and care resources, regardless of income or insurance status. The National Breast and Cervical Cancer Early Detection Program (NBCCEDP), funded through the CDC, provides screening services for underserved, uninsured and underinsured women in all 50 states, the District of Columbia, several US territories and Alaskan/Native American organizations. The American Breast Cancer Foundation is another of many groups that also provide financial support for screenings.

Screenings may not be the answer either. Debate on the risks vs. benefits of mammograms continues. Recent evidence points to higher rates of over-diagnosis and unnecessary treatments than was previously reported. There are also legitimate concerns about radiation exposure. In April, New York Times reporter Peggy Orenstein wrote about her diagnosis and battle with the disease, honestly discussing her shift in thinking about mammograms as protocol for low-risk women in their 40s.

While mammography continues to be the standard screening tool, several alternatives already exist, and researchers are busily working on others, including a cancer-detecting bra. Really.

Some women at high risk who choose not to undergo mastectomies opt for preventive chemotherapy, which uses tamoxifen or raloxifene to block certain estrogen receptors. This regimen comes with numerous side effects, again forcing the risk/benefit decision. Organizations like Breast Cancer Action advocate for research on less toxic treatments and encourage women not to buy into the “hype” of pink ribbon marketing. Others like the National Breast Cancer Coalition want more more seats at the research and policy decision-making tables for breast cancer patients.

Provisions in the Affordable Care Act mandate coverage for breast cancer screenings, which will benefit many – but not all – women who are currently uninsured. It also requires some private insurance to cover genetic testing and counseling for women at high risk due to family history of breast or ovarian cancer.

Which leads back to decision-making. If women at high risk for cancer get tested and have the BRCA1 or BRCA2 gene, what then?

Jolie encourages women to “seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices.”

There’s a saying that knowledge is power. Jolie said, “I feel empowered that I made a strong choice that in no way diminishes my femininity.” She has access to the best health care money can buy.

All women need similar access to the best information, guidance and care so they can make their own strong choice.