Kirby Lewis – A Relentless Voice for Male Breast Cancer and Survivorship

Advocate Spotlight: Kirby Lewis

In March 2012, Kirby Lewis discovered a small lump near his left nipple. At 51 years old, he never expected it to be breast cancer—neither did his first doctor, who dismissed the possibility outright. But after multiple tests, including a biopsy, Kirby received a definitive diagnosis: Stage 2 breast cancer.

Determined to get the best care possible, Kirby switched doctors, finding an oncologist who provided the support and answers he needed. With the unwavering support of his wife MaryAnn, his mother, and his sister, he underwent a radical mastectomy in May 2012. For a time, he was declared cancer-free—but his journey with cancer was far from over.

From Survivor to Advocate

Four years later, in 2016, the cancer returned. The reality of living with metastatic breast cancer, reinforced what Kirby had come to understand all too well: the narrative around breast cancer needed to change. Men get breast cancer, too, and the risk of recurrence is real. Seeking support, Kirby searched for advocacy groups focused on male breast cancer, only to find that few existed. So, he created his own platform—speaking out, educating others, and making sure no man diagnosed with breast cancer would feel as isolated as he once did.

Kirby sought advocacy opportunities with organizations like Living Beyond Breast Cancer, where he volunteered on their helpline, and the Male Breast Cancer Global Alliance, where he became an ambassador. He took his story to national and international audiences, speaking at events hosted by METAvivor, West Virginia University, and Moffitt Cancer Center. In a striking moment of recognition, Kirby’s image graced two billboards in Times Square, driving home a message that too often goes unheard: breast cancer affects men, too.

Expanding the Survivorship Mission

As Kirby immersed himself in advocacy, he realized his work couldn’t stop at raising awareness about male breast cancer. His focus expanded to genetics, inheritance, and the broader impact of breast cancer across genders. “It’s not just about men getting breast cancer—it’s about understanding the genetic factors that affect both men and women,” he explains. With this new focus, he became an invaluable resource for families navigating genetic risk and hereditary cancer concerns.

Realizing the need for systemic change, Kirby sought additional support for his advocacy work and opportunities to advocate for critical policies impacting cancer survivors. He joined the National Coalition for Cancer Survivorship (NCCS) Cancer Policy and Advocacy Team (CPAT) and attended the CPAT Symposium multiple times. Additionally, he contributed as a Patient Advocate on the Redefining Functional Status Committee, a groundbreaking effort by NCCS to develop patient-centered quality measures for cancer survivorship. His work on this committee helped shape how healthcare providers assess and address the long-term impacts of cancer treatment on patients’ daily lives.

His most impactful moments with NCCS, he says, come from advocating on Capitol Hill. “Speaking with different members of Congress is always a valuable opportunity to be the squeaky wheel,” he says. He believes that legislative advocacy is crucial for ensuring timely treatment, insurance coverage, and broader support for cancer survivors nationwide.

A Life Rooted in Resilience and Purpose

Outside of his advocacy work, Kirby and his wife MaryAnn own a lavender farm, where he applies his background as a scientist to create new products. Though his disease limits how much he can work, he remains passionate about formulating innovative products from the farm’s yield. It’s a labor of love—one that brings him both peace and purpose amid the ongoing challenges of living with metastatic cancer.

Kirby’s approach to advocacy has evolved over time. Once fully immersed, he now carefully selects engagements that align with his health and capacity. “I used to be full throttle, all in. But as my disease has advanced, I concentrate on speaking to small groups and focusing on what I can manage,” he shares. Despite these changes, his voice remains powerful, his message clear: cancer advocacy is essential, and the work must continue.

Encouraging Others to Take Action

For those considering advocacy, Kirby has one simple piece of advice: “Just do it!” He emphasizes that the relationships and networks built through organizations like NCCS are invaluable—not only for making an impact in policy and awareness but for personal growth and support. “Advocacy is the squeaky wheel concept,” he says. “It broadens ideas, creates new strategies, and fosters meaningful conversations about cancer, legislation, and survivorship.”

As Kirby continues his work, his impact is undeniable. His legacy is one of resilience, education, and the unwavering belief that every voice—especially the ones that aren’t often heard—matters. “Men get breast cancer, too. And we need to talk about it,” he says. Thanks to advocates like Kirby, that conversation is happening. And it’s changing lives.

Learn more about NCCS’s CPAT program for advocates and join for free.