Knowing BRCA Changed My Life

Posted on by DCPC

By Debbie Wasserman Schultz
Wasserman Schultz represents Florida’s 23rd District in the U.S. Congress.

I’m thrilled to have an opportunity to contribute to this new and important initiative from CDC, created after the bill I wrote following my own battle with breast cancer was passed into law as part of the Affordable Care Act.

Part of the goal of the Breast Health Education and Awareness Requires Learning Young Act, or EARLY Act, is to reach young women with important breast health messages through innovative social media venues.

The Early Act has one central tenet: that we must empower young women to understand their bodies and speak up for their health.

With National Women’s Health Week culminating just last month, it’s important that we continue the conversation about how cancer affects all of us year-round—particularly young women.

We have made major strides in understanding, diagnosing, and treating breast cancer, but we still have so much more to do.

We know that breast cancer strikes women from all backgrounds, races, and ethnicities, but we also know that it can be more of a disproportionate threat to some groups, including Ashkenazi Jews like myself.

The bottom line is that all women need to know the early warning signs of breast cancer, and be aware of their own personal risk factors. We also must keep improving the tools that will help us identify those risks, such as genetic testing—and ensuring appropriate health care coverage to allow wide access to such tools.

Sobering statistics back up this need: one in eight women will get breast cancer in her lifetime. And breast cancer, like any cancer, doesn’t just affect the patient. Cancer in a loved one impacts spouses, parents, extended family and friends—and often most of all, our children.

Despite the perception that breast cancer is only something older women need to worry about, young women can and do get breast cancer.

I myself was a young woman at high risk, but didn’t know it. Just months after a clean mammogram, in late 2007, I heard those terrible words, “You have breast cancer.”

For as much as I thought I knew as an advocate and legislator in the fight against breast cancer, there was much I didn’t know now that I was a patient.

I didn’t know that as an Ashkenazi Jew, I was ten times more likely to have a genetic mutation that drastically increases the likelihood of getting breast or ovarian cancer.

I didn’t know that carriers of the BRCA gene have up to an 85 percent lifetime chance of getting breast cancer and up to a 60 percent chance of getting ovarian cancer.

After my diagnosis and going through a genetic test, I found out that I do indeed have the BRCA2 mutation.

Empowered with this knowledge, I made the life-altering decision to undergo seven surgeries—including a double mastectomy and a prophylactic oophorectomy (to remove my ovaries). I knew it gave me the best chance of being there for my children as they grew up.

I was fortunate that I knew enough about my risks and got the help I needed, but I didn’t find my tumor through luck. I found it through knowledge and awareness.

In 2014, it’ll be easier for women to take charge of our health, thanks to the many benefits of the Affordable Care Act.

For example, women now have access to free yearly wellness visits and critical cancer screenings like mammograms.

I’m also working on legislative initiatives to ensure that insurance companies provide affordable coverage for genetic testing.

I’m so thrilled to see the EARLY Act at work, and to contribute my own story of “knowing BRCA”!

We must give more women the tools they need and the power to stand up, the power to speak up, and the power to survive.

By working together, we can save more of our moms, sisters, grandmothers, and daughters. So please, help us get a head start by talking with the women in your life today.

Posted on by DCPC

3 comments on “Knowing BRCA Changed My Life”

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    Thank you for sharing your story. Truly impactful. Your knowledge enabled you to make choices that likely saved your life. But we physicians would like to identify men and women who carry hereditary cancer genetic mutations PRIOR to the development of cancer. There are vulnerable populations at high risk of carrying a BRCA mutation, even without a family history of cancer. Ashkenazi Jews are one of them. Black men and women from the Caribbean also have a very high rate of BRCA mutations–in fact, BRCA mutations are seen in up to 25% of Bahamian women with breast cancer! Our nonprofit, Yodeah.org, or “to know” in Hebrew, as part of the Prevent Hereditary Cancer Coalition, is committed to educating and facilitating cost-effective testing in these vulnerable populations. We can then take proactive steps to prevent cancer.

    At my point of information regarding my own breast cancer in the making, I learned that the genetic testing was not covered by the Indian Health Service (IHS) contract health department (Health Market Place for American Indians). This test is about $3,000.00 and can save lives early on. There is a protocol in place for the initiation of this BRCA test.
    Fortunately, I signed an agreement with the laboratory company to pay the amount if I could not have it covered by my pre-authorization dept. of my personal health care insurance company.
    The timing of the results was more than two weeks and by then I already met with the breast care surgeon and opted to have a double mastectomy. Four days later I met with the oncologist and she had the results of the BRCA genetic test of mine. The test was negative! Together my surgeon and myself weighted the options outcome for ME, and we collaborated to do a lumpectomy procedure.
    I am .625% American Indian, and if I know that IHS is not covering the cost for a BRCA test, I know that thousands of other grandmothers, mothers, kinship guardians are not going to get that crucial 2nd step health care analysis.
    I want to help others save lives for women of inequities too.
    (Side note: my mother had breast cancer twice. And still living at 88 years young in very good health)

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Page last reviewed: Tuesday, February 9, 2021
Page last updated: Tuesday, February 9, 2021