Janice Cowden, a former nurse, is passionate about bridging the knowledge gap and facilitating improved communication between patients and their healthcare team and increasing inclusion of patient advocates in the scientific community. She was diagnosed with stage I triple-negative early-stage breast cancer in 2011; later, Janice was diagnosed with metastatic disease in 2016. She became a Living Beyond Breast Cancer Hear My Voice (HMV) Advocate in 2017 and continues to serve as a Helpline Volunteer.
We asked Janice a few questions about her experience with LBBC’s leadership training and the impact it's had on her advocacy.
What personal experience, or the experience of someone you know, motivated you to become an advocate for people impacted by breast cancer?
My original motivation stemmed from the fear of a quick demise following my stage IV triple-negative breast cancer diagnosis. Being a former nurse, I recognized the importance of acquiring extensive knowledge about my condition to become my own advocate. As time passed and I remained NED (now seven years out), witnessing the impact and devastation of metastatic breast cancer (MBC) on friends and acquaintances, particularly after leaving HMV training in 2017, where our first classmate passed away just three weeks later, I became more committed to this cause. I now advocate for all MBC subtypes.
What role has LBBC played in your advocacy?
I owe every opportunity and connection I've made to LBBC. Before participating in HMV in April 2017, a mere nine months after my mTNBC diagnosis, I hadn't encountered anyone with MBC or engaged in any MBC social media or local support groups. LBBC's [Metastatic Breast Cancer Conference] in 2017 became the place where I "found my tribe," and that tribe has grown from a small village to a global community. Had I not been accepted to HMV, I cannot say with certainty that I would have attended the conference in 2017, but I am eternally grateful that I did. LBBC feels like home.
What changes in the breast cancer community do you hope to see as a result of your advocacy?
My hope is to raise public awareness about MBC and, for those diagnosed with it, utilize the knowledge gained as a research patient advocate to inform and educate fellow patients about the latest research, drug development, and clinical trials. As a peer support patient advocate, I connect newly diagnosed MBC patients with others and serve as a mentor for two organizations, as well as a helpline volunteer for LBBC. As we often say, we are #strongertogether, and MBC can be an isolating experience without connection.
What advice do you have for other individuals who want to become advocates in the breast cancer community?
Build connections, establish relationships, don't hesitate to ask questions, and seek help when needed. Reach out to experienced advocates and let them assist you in determining your path. Find your niche and passion and pursue it. Ally yourself with organizations that align with your advocacy interests. Ultimately, it's all about forging connections early on. Also, don't confine yourself to one perspective — your initial passion may evolve. Be open to learning and engaging in various forms of advocacy.
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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.
