My story, like many others, begins with the words “You have breast cancer.”
I was first elected to the House of Representatives in 2005. Then in 2007, when I was only 41 years old, just after my first mammogram came back clean, I was doing a routine self-exam and found a lump. It turned out to be breast cancer. I also discovered that, like many other Ashkenazi Jewish women, I carry the BRCA2 gene mutation. That gene mutation made me more than seven times more likely to get breast cancer and 30 times more likely to get ovarian cancer before I turned 70 years old.
After discussing it with my doctors and my husband, I chose to have a double mastectomy and have my ovaries removed.
I also chose to keep my battle private for 15 months.
My children were very young. My twins were eight and my youngest daughter was four. I didn’t want my children to know until I finished treatment, had a clean bill of health, and could assure them I was cancer-free.
I didn’t want the disease to define me. I am a public servant, which makes my private life more prone to becoming public discussion. I didn’t want the media to add the diagnosis to my name every time I appeared in the news: “Congresswoman Debbie Wasserman Schultz, who is battling breast cancer.” My name is long enough!
I also wanted to decide what I was capable of. I didn’t want others assuming that, because I was fighting cancer, doing much else was too burdensome. So I entered my cancer treatment with the help of my mother and three close friends who were my caregivers during my surgeries and beyond.
Choosing to keep such a significant health matter private shaped many of the decisions I made. I opted to go through my surgeries during recess weeks in Washington, when I knew I had the smallest chance of running into colleagues, friends, or staff. That meant I could make sure I didn’t miss votes when Congress was in session.
I kept my circle limited to those whose help I needed most—my husband, brother, and parents; a few close friends; and a tight circle of staff who needed to get me to and from the floor for votes and adjust my schedule for medical procedures.
There were only two members of Congress who were aware of my situation—my then roommate former congresswoman Melissa Bean of Illinois and former congressman Ron Klein of Florida. I couldn’t carry anything and I needed assistance when traveling home to Florida. I trusted them both as dear friends, then and now.
It was even a challenge to get through TSA security twice a week and required extra discretion. I carried a folded-up note from my doctor that explained the metal expanders in my chest.
Nine days after my double mastectomy, I traveled back to Florida because I was determined to attend a previously scheduled fundraiser I was hosting for Speaker Nancy Pelosi. I hid the chest drain on my side beneath a boxy jacket, and a friend used fishing line to jury-rig the pain pump attached to my chest into a small purse for the occasion. Anyone who knows me knows that I’m a hugger. This habit led to three staffers gingerly intercepting guests who attempted to greet me, and our familial hugs were quickly exchanged for more formal handshakes.
There is no right way to navigate cancer—every individual should get to choose for themselves. Being able to fight this battle privately, with only my chosen community, was a blessing for me. For others, fighting very publicly may be the ideal course of action. It’s about having agency and autonomy over our personal health experiences and decisions.
Beating cancer is only the beginning of the journey of cancer survivorship; and for me, it was also the beginning of a mission to translate my experiences into something greater than myself. I wanted other young women to have better access to information and the tools to detect, fight, and survive breast cancer.
That’s why, after surviving 15 months of surgeries and treatment, I introduced the Education and Awareness Requires Learning Young Act, or EARLY Act. The EARLY Act is designed to help educate health care providers about the specific threats and warning signs of breast cancer in younger women that can lead to early detection, diagnosis, and survival. We’ve secured nearly $40 million since it became law and are now in the process of reauthorizing this critical legislation for the third time, for a total of $9 million in annual federal breast health education programs.
My main message is, Pay attention to your breast health, because early detection is the key to survival.
Congresswoman Debbie Wasserman Schultz has represented Florida’s 23rd congressional district since 2005.
