Meet the Advocate: Ginny Mason

Mason’s diagnosis came only after almost four months of effort, misdiagnoses, and visits to numerous clinicians. She found that her health care providers wouldn’t take her seriously and insisted she was fine. She jokes, “Back then, I was a good quiet preacher’s wife.” Perhaps not so quiet, as she persisted until she had the correct diagnosis. But the rarity of the disease meant that for years she knew no one else facing that same diagnosis. 

In the late 1990s, she chose a prescient topic for her nursing degree thesis: online support groups and how the Internet might change the disease experience for people with less common cancers. At the time, she says, many thought she had picked a rather silly topic, but even then she recognized the bright promise of the Internet for those with rare diseases – connection. 

She had never met another person with inflammatory breast cancer until her online research led her to a small support group out of Canada. That connection led to others and turned Mason into something of an Internet visionary. 

“It was incredible to talk to another person with inflammatory breast cancer for the first time,” she says of her experience connecting online.

Despite the downsides she sees in today’s Internet – particularly misinformation and the ease with which it can be found – she finds that the promise remains. It can still help people realize they are not alone.

Her early online – and occasionally in-person – connections with kindred spirits helped lead in 1999 to the formation of the Inflammatory Breast Cancer Research Foundation, an organization she’s been intimately involved with ever since.

With a focus on fostering research into the disease and improving the lives of patients and their family members, the Foundation started as, and remains, a web-based group.

“For an all-volunteer non-profit without a walk-in office, we’ve done amazingly well,” Mason says. “When we said we were going to be a web-based organization in 1999, people looked at us like we had lost our minds. Little did we know we were trailblazers.”

This trailblazer, while working full-time as a nurse in the field of mental health, was staffing the Foundation’s 1-800 support line. In the evenings, she would return calls that had come in from those newly diagnosed and in need of help. 

Over the years, her role with the organization morphed and grew, and in 2005, she left her full-time paying job to become a full-time volunteer with the Foundation. A few years later, when the group’s founder stepped down, the board of directors invited her to step up. She knew nothing about administering a non-profit, but of necessity, she learned quickly. 

As president, she says, her role is “to do whatever has to be done,” which for her is part of the fun. The role has given her the opportunity to work with amazing researchers, physicians, and other advocates. And to work on clinical trials, starting with a 2001 trial in which the Foundation helped recruit 19 of the 21 trial participants.

It has also opened up a wider set of opportunities, such as a chance to serve for four years as a member of the Food and Drug Administration’s Oncology Drug Advisory Committee.

Always an Internet pioneer, Mason is a charter member of SWOG’s digital engagement committee and a prolific contributor to the oncology research and advocacy conversations on Twitter, where she posts as @IBCResearch.

She cites her role on the digital engagement committee as a highlight of her time with SWOG. The committee has helped broaden her view of what we can do in clinical trials, she says, and the publications that have come from its work have raised awareness of the importance of social media and the positive impact it can have in medicine.

Of her work with SWOG’s breast committee, high points include speaking to the press about the S1007 RxPONDER results. She’s also particularly proud of having helped recruit Roberta Albany as her co-advocate on the breast committee after fellow advocate Elda Railey stepped down last year, and she emphasizes the vital part more seasoned research advocates can play in mentoring advocates newer to the research components of the SWOG role.

She’s still full-time head of the Inflammatory Breast Cancer Research Foundation, but she’s also delighted to spend time with her grandchildren and great-grandchildren. In fact, last summer she and her husband moved from Indiana to a small town in Virginia to be closer to them.

The arc of her life since her initial diagnosis has not followed the direction she’d expected, but she says the cancer has allowed her to become the person she was probably supposed to be. She won’t say the disease was a blessing, but it was an opportunity. An opportunity she has taken and run with.

To learn more about Ginny Mason, and SWOG’s other patient advocates, visit the advocate committee’s page on the SWOG website.