Transforming Health Care through Innovative and Impactful Research

Photos and text used with permission of
Ms. Amalia Rigoni.

Nine years ago, I was "living the American dream." I had a successful career; I was young, healthy, and happily married. First in my family to get a college degree, I also became the first to be diagnosed with cancer.

I had felt a thickening in my breast and thought I should have a biopsy. On the advice of several doctors, I waited 6 months. Ultimately, I was diagnosed with an occult tumor stage 2B or 3A breast cancer. The diagnosis rocked my world; no one I knew - in my family or in my Hispanic community - had breast cancer. Everything I read on the Internet convinced me that I would not survive 2 years.

Then I received a phone call from a friend of my brother who told me she had had breast cancer 10 years before and had survived. This news struck me as if I had won the lottery! I was so happy to speak to someone who knew what I was going through, someone who had actually walked in my shoes. This woman became my mentor and I discovered the power of information that comes from connecting one-on-one with an actual survivor.

After the shock of my diagnosis, I kept a "stiff upper lip," but I was in denial and still had many questions that I could not ask my friends, family, or even my doctors. I looked in the phone book and found Y-ME National Breast Cancer Organization (now known as Breast Cancer Network of Strength), offering a 24-hour hotline. At my darkest hour, I reached out and there were breast cancer survivors volunteering to help me. As I began to navigate my cancer journey, I discovered the importance of this organization's mission and it became my own: To ensure, through information, empowerment, and peer support, that no one faces breast cancer alone.

My decision, ultimately, was to fight hard and I opted for the most aggressive treatment: Mastectomy with immediate free TRAM reconstruction, chemo, 35 rounds of radiation, and 5 years of hormonal therapy. I also started volunteering for Network of Strength as a breast cancer workshop leader. That led to rigorous peer counselor training so I could be the voice on the other end of the line helping someone facing a diagnosis. Now a supervisor, I help train other survivors to become peer counselors on Network of Strength’s YourShoes® 24/7 Breast Cancer Support Center. As peer counselors, we replace fear with facts and provide objective information and resources. We do not give medical advice but we provide immediate emotional relief, share our experiences, and empower patients to be knowledgeable players on their health care teams.

In my work, I find that cancer patients come from different places, but their reactions to a breast cancer diagnosis are somewhat similar: First, we are full of fear, then there is denial, anger, and, finally, acceptance. My experiences with the thousands of women I have spoken with on the hotline and met in person have helped me understand that advocacy is the best weapon we have to fight this disease until a cure is found. Working for Network of Strength allows me to share my story, one I have also shared through interviews for programs on ABC News, Telemundo, Fox Chicago, and in publications, including The American Journal of Medicine, The New York Times, The Wall Street Journal, and Good Housekeeping.

During my chemotherapy regimen 9 years ago, I remember telling my husband, "Some day I will go to Washington to advocate for the eradication of breast cancer." I finally got my opportunity in January 2009, when I was invited to attend the Department of Defense Congressionally Directed Medical Research Programs (CDMRP) Breast Cancer Research Program in the Washington, D.C. area, as a consumer reviewer of breast cancer research proposals. It has been thrilling to serve as a reviewer and to imagine the impact that the medical research could have on all of the breast cancer patients I have met as a peer counselor and advocate. I have been back three times and was honored to give last year’s consumer orientation speech.

The whirlwind of CDMRP experience is challenging, enlightening, and inspiring from a personal and professional level. It is challenging to read multiple proposals in a 2-week timeframe; enlightening to be exposed to multi-disciplinary research; and inspiring to convey possible patient care issues from the breast cancer survivor's point of view to a room full of highly educated scientists. As a survivor, I am impressed with the researchers and love that they enjoy being able to meet people like me, patients who will be impacted the most by their efforts to eradicate breast cancer.

It takes a village to fight the war on breast cancer. Breast cancer does not discriminate, and women and men of all ages and races are at risk for this disease. Yet, I am encouraged and feel this a great time of hope. I am proud to join efforts with the Department of Defense to bring together all of us who are devoted to fighting this war brings us closer to the cure.