Era of Hope 2011 Consumer Vignette

Title: A Consumer’s Perspective

Consumer: Bianca Lundien Kennedy and Amalia Rigoni

Kennedy: I was diagnosed with breast cancer when I was 35 years old, and at the time I was diagnosed, my sister had already had breast cancer twice in her 30s. She’s 3 years older than me. And so I had a distinct advantage and vantage point from which I was able to view the world of breast cancer. It had already touched my family. I saw her get through it and I knew I would be able to get through it as well.

So taking my cues and lessons from what her experience was, I decided to go aggressively and I opted for the bilateral mastectomy and reconstruction and did the 6 months of chemotherapy and in the midst of my chemo, my sister was diagnosed again, so in her other breast, so then we both went through it at the same time. But she’s doing well and I’m so thankful for that, for the doctors, and I know a lot of those treatments we both received have stemmed directly from the types of research and medical and innovation that the Department of Defense brings about so to overstate that significance is impossible.

Rigoni: Well, my breast cancer experience was one of many firsts. My family immigrated here to the United States and I was one—the first one to get a college degree, the first one to get breast cancer.

So at 42 years old I found a thickening, not exactly a lump. And although the mammograms were normal, I ended up having an occult cancer which means that in younger women the breasts are denser and so they’re not being picked up. So by the time they found it, it was like 4 centimeters and it was in the lymph nodes. So I ended up having a mastectomy with immediate reconstruction, chemotherapy, radiation, Tamoxifen and Femara. So again it was a first for me and just like most women that get diagnosed, the beginning is the hardest.

Kennedy: I got involved in the DoD Program after being on the hotline for several years at Y-Me National Breast Cancer Organization. The Advocacy Department approached me if I would be interested and I applied—was thankfully accepted into the program and my first session with the Department of Defense was in January 2009 and I actually got to go with my best friend from Y-Me [Laughs], Amalia Rigoni.

Rigoni: I jumped at it because I have a natural curiosity not only for other people but for myself. And I bring that back to the hotline.

We both have a sense of passion. We both have learned from our breast cancer journey and we want to share that, so we boldly went where we had never gone before but the thing that we understood is, you know, we took the fear out of cancer by empowerment. And we looked at this as an opportunity to be empowered.

Kennedy: We would get the proposals and we would look through them, critique them, research them a little bit at home, and be able to come up then with our own input, our feedback, and most importantly we would be able to discern and convey to the panel of scientists and fellow consumer reviewers our opinions on how this particular proposal will impact the breast cancer community at large.

I think everyone who does this process considers that an honor and a tremendous responsibility. And but we look forward with fervor to—to getting into that session with the scientists and being able to raise our concerns, to have them meet our questions with their immense knowledge, and hear about things that are on the horizon—very exciting breakthroughs in the world of breast cancer research.

Rigoni: It’s just really great to be able to give the scientists a sense of urgency that we have, another perspective, so I ask the question, what do I tell my callers on the hotline when they say you know why is it that I’m in an underserved area and there’s just not enough for me? What is going on?

Kennedy: I’m able to tell them that while we don’t see it in our daily lives that there are a myriad of people that are in the trenches every day working and fighting for us and that they’re there and they’re not stopping. They’re going to continue working until one day the breast cancer is eradicated.

Rigoni: When I had chemotherapy you know 11 years ago I said to my husband, some day I’m going to go to Washington. I don’t know what I’m going to do but I’m going to do something. And so what I’m saying to the scientists—that the program, the DoD Program affords us the capability to fight this war together, to really focus on the research that needs to be done with a sense of urgency but also with the human side of breast cancer.

Kennedy: We don’t rise up to anything in life without challenging ourselves. And you’ll find that the challenge is one you can—you can meet with you—with your passion, if you have a passion of doing any kind of advocacy in breast cancer and getting the word out there to people and inspiring people and letting people know that there are so many things on the horizon medically that will be there to help in years to come. You will find it an extremely rewarding, immensely satisfying journey.

Rigoni: I think we’re getting closer and closer.