Tiffany Nardella lives in New Jersey with her husband Michael and their beloved senior pitbull Comet. She loves to spend much of her time outdoors hiking, paddling, or simply reading under a tree. Tiffany retired from her position as a Philadelphia public librarian after her stage IV diagnosis. She was originally diagnosed with er/pr+ her2- stage 3 breast cancer in 2009 at the age of 34. She had three recurrences that were treated aggressively. In early 2021, cancer spread to her bones and recently her liver.
We asked Tiffany a few questions about her experience with LBBC’s leadership training and the impact it’s had on her advocacy.
What about your personal experience or the experience of someone you know motivated you to become an advocate for people impacted by breast cancer?
My first breast cancer diagnosis was at the age of 34. Several years later, I experienced my first recurrence, and at the same time, my dear friend recurred and was diagnosed with [metastatic breast cancer (MBC)]. She died shortly after, and it was devastating. Prior to her passing, we talked a lot about how Breast Cancer Awareness Month was not doing enough for those with MBC. In fact, at the time, it seemed that MBC patients were being ignored despite MBC being a terminal diagnosis. I was diagnosed with MBC in 2021.
What role has LBBC played in your advocacy?
Once I was diagnosed with MBC, LBBC became my primary resource for information. I watched webinars and attended a virtual conference to learn more. I became armed with information, which allowed me to show up to my own appointments with the ability to self-advocate and ask the right questions. When I saw the application to apply to Hear My Voice, I was ready and jumped on it.
What changes in the breast cancer community do you hope to see as a result of your advocacy?
There are a lot of changes I’d like to see. First, I want all folks with MBC to have the right information so that they can advocate for themselves. Next, I hope to see the Metastatic Breast Cancer Access to Care Act passed. Waiting two years after a terminal diagnosis to be eligible for Medicare makes zero sense. The disparity in breast cancer deaths also needs to be addressed, and of course, we need more funds for cancer research and more breast cancer funds targeted to MBC.
What are some of the biggest lessons you’ve learned through your advocacy journey?
Some of the biggest lessons I’ve learned are the importance of holding space for people to share their stories and making connections that are so meaningful. I’ve also learned how easy it can be to sign up for alerts around legislative actions and that often letters are written for you to personalize and send off. I’ve also learned to schedule my time because life cannot only be about cancer.
What advice do you have for other people who want to become advocates in the breast cancer community?
The advice I would give is to start by becoming informed. Follow trustworthy organizations like LBBC. If you are newly diagnosed with MBC, give yourself time to cope and don’t feel pressure to do it all. Pace yourself, make friends, rest, attend events and conferences, and definitely apply to advocacy training programs. Hear My Voice has been a fabulous experience!
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Advocates play a major role in Living Beyond Breast Cancer’s work. Whether rallying together to help protect access to reconstruction options or providing emotional support to others impacted by breast cancer– advocates impact change by lending their time, talents, and voices.
Learn more about the power of advocacy through the stories of advocates in our community.
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The views and opinions of our bloggers represent the views and opinions of the bloggers alone and not those of Living Beyond Breast Cancer. Also understand that Living Beyond Breast Cancer does not medically review any information or content contained on, or distributed through, its blog and therefore does not endorse the accuracy or reliability of any such information or content. Through our blog, we merely seek to give individuals creative freedom to tell their stories. It is not a substitute for professional counseling or medical advice.
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Living Beyond Breast Cancer is a national nonprofit organization that seeks to create a world that understands there is more than one way to have breast cancer. To fulfill its mission of providing trusted information and a community of support to those impacted by the disease, Living Beyond Breast Cancer offers on-demand emotional, practical, and evidence-based content. For over 30 years, the organization has remained committed to creating a culture of acceptance — where sharing the diversity of the lived experience of breast cancer fosters self-advocacy and hope. For more information, learn more about our programs and services.
